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# Ataxia UK

Supporting people with ataxia until a treatment or cure is found

## Sitemaps

- [XML Sitemap](https://www.ataxia.org.uk/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Gluten Ataxia in Children and adolescents – A study of patients at the Sheffield Paediatric Ataxia Centre](https://www.ataxia.org.uk/research-news/gluten-ataxia-in-children-and-adolescents-a-study-of-patients-at-the-sheffield-paediatric-ataxia-centre/) - What did this study look at? Gluten ataxia is a neurological condition linked to gluten sensitivity, where the immune system mistakenly attacks part of the brain called the cerebellum, which is involved in balance and coordination. There is growing recognition of Gluten ataxia in adults, but much less is known about how it affects children
- [Are You Drunk? by Clare Sheeran](https://www.ataxia.org.uk/your-blog/are-you-drunk-by-clare-sheeran/) - I was diagnosed with Friedreich’s ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47. I am lucky enough to still be driving. A while back, around Christmas, I was stopped by the police during a routine drink-driving campaign. When they spoke to me, I was slurring
- [IntraBio and levacetylleucine (AQNEURSA) updates](https://www.ataxia.org.uk/uncategorised/intrabio-and-levacetylleucine-aqneursa-updates/) - IntraBio is a biopharmaceutical company focused on developing treatments for progressive neurological conditions. This page provides updates on their levacetylleucine programme. Levacetylleucine is a chemically modified version of the amino acid L-leucine. Amino acids are the building blocks of proteins. There have been case reports over the years describing the benefits of similar chemically modified
- [All About Ataxia](https://www.ataxia.org.uk/uncategorised/all-about-ataxia/) - BOOKING HAS CLOSED Please email volunteering@ataxia.org.uk to be placed on the waiting list for the next All About Ataxia. Join us at our next All About Ataxia seminar on Saturday the 10th of October 2026. We have redesigned the format of All About Ataxia to enable it to be a one day online event, 10am-2pm.
- [All About Ataxia November 2026](https://www.ataxia.org.uk/uncategorised/all-about-ataxia-november2026/) - Join us at our next All About Ataxia seminar on Thursday the 26th of November 2026. We have redesigned the format of All About Ataxia to enable it to be a one day online event, 10am-2pm. We ask that you log on at 9:45 to get comfortable and ensure all tech is working. The timing
- [Lexeo Therapeutics update page](https://www.ataxia.org.uk/research-news/lexeo-therapeutics-update-page/) - Lexeo Therapeutics is a genetic medicine company, developing treatments for a number of conditions including cardiomyopathy associated with Friedreich’s ataxia (FA). Cardiomyopathy is a heart condition involving stretching, thickening, or stiffening of the heart muscle, making it harder to pump blood around the body. The article below starts with the first update in February 2022, with newer updates below In February 2022, Lexeo announced that the US medicines
- [The Value of Ataxia Centres - The Value of Treatment project](https://www.ataxia.org.uk/research-news/the-value-of-ataxia-centres/) - The ‘Value of Treatment’ (VoT) project was a European Brain Council (EBC) project focused on evaluating coordinated care in three neurological diseases, one of these being ataxia. The EBC is a non-profit organisation which promotes brain research to improve the lives of Europeans with brain conditions. The ataxia study, funded by Takeda and Reata, commenced
- [Chair Pilates](https://www.ataxia.org.uk/your-blog/chair-pilates-2/) - Our Chair Pilates sessions are led by Sonia Forde who has over 17 years’ experience as a Pilates teacher. Read more about Sonia’s work here. Our next Chair Pilates session will be taking place on Tuesday 20th October. Please book using the form below: Please Note: Using Zoom Once you have completed the booking form,
- [PTC Therapeutics Updates Page](https://www.ataxia.org.uk/research-news/ptc-therapeutics-updates-page/) - PTC Therapeutics is a pharmaceutical company developing treatments for a number of conditions across metabolic and neurological conditions including Friedreich's ataxia (FA). The article below starts with the first update from 2023, with newer updates below PTC Therapeutics have announced the initial results of their Phase III MOVE-FA trial of vatiquinone in people with FA.
- [Testing existing medicines in cells to find treatments for SCA15, SCA29 and Gillespie Syndrome](https://www.ataxia.org.uk/research-news/cerebellar-ataxia/drug-repurposing-to-accelerate-therapeutic-development-for-itpr1-associated-cerebellar-ataxias/) - Principal Researchers: Dr Ricardo Parolin Schnekenberg, Prof Joanne Ng, Prof Selina Wray and Prof Francesco Muntoni, University College London (UK) Scientific title: Drug Repurposing to Accelerate Therapeutic Development in ITPR1-associated Cerebellar Ataxias Scientific summary: Cerebellar ataxias are genetically heterogeneous and clinically debilitating disorders, yet many converge on a shared cellular mechanism of dysregulated IP3R1-mediated calcium
- [Understanding Spastic Ataxia Type-8 and its effects on brain cells using cell models](https://www.ataxia.org.uk/research-news/cerebellar-ataxia/oligodendrocyte-models-of-spastic-ataxia-8-for-remyelination-olyspax8/) - Principal investigator: Dr Federico Herrera, University of Lisbon (Portugal) Lay title: Understanding Spastic Ataxia Type-8 and its effects on brain cells using cell models Lay summary: Spastic Ataxia 8 (SPAX8) is a rare inherited neurological disorder that affects movement, balance, and muscle control. It is caused by mutations (changes) in a gene called NKX6-2, which plays a key
- [Testing an app-based personalised exercise programme in people with spinocerebellar ataxias](https://www.ataxia.org.uk/research-project/impact-pr-esca-an-intensive-motor-personalized-anywhere-and-challenging-training-for-pre-and-early-ataxic-spino-cerebellar-ataxia-patients/) - Principal researchers: Dr Winfried Ilg, Kristina Bohn and Prof Matthis Synofzik, University of Tübingen (Germany) Lay title: Testing an app-based personalised exercise programme in people with spinocerebellar ataxias Lay summary Current rehabilitation programmes for spinocerebellar ataxias (SCAs) mainly target those in the moderate or advanced stages of disease severity, when symptoms have progressed. This research
- [Exploring and improving psychological wellbeing in ataxias](https://www.ataxia.org.uk/research-project/towards-improved-mental-quality-of-life-in-ataxias-characterising-psychological-function-and-its-correlates/) - Principal researcher: Dr Louisa Selvadurai, Monash University (Australia) Scientific title: Towards improved mental quality of life in ataxias: Characterising psychological function and its correlates Scientific Summary: Individuals with ataxia often experience cognitive and emotional challenges, such as low mood and word-finding difficulties (psychological symptoms), in addition to movement symptoms. These can negatively impact occupational, interpersonal, and day-to-day wellbeing.
- [Improving speech recognition for people with ataxia](https://www.ataxia.org.uk/research-project/efficient-and-personalised-speech-recognition-for-ataxia/) - Principal Researcher: Prof Chenghua Lin, University of Manchester (UK) Scientific title: Efficient and personalised speech recognition for ataxia Scientific summary: The primary purpose of this investigation is to address the communication barriers experienced by individuals with ataxia by developing an efficient and personalised automatic speech recognition (ASR) framework tailored to their unique speech patterns. By
- [Another good day in the fight for Skyclarys by Clare Sheeran](https://www.ataxia.org.uk/your-blog/another-good-day-in-the-fight-for-skyclarys-by-clare-sheeran/) - I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47. I live in Belfast, Northern Ireland, so I now have to wait for the UK decision on Skyclarys. Yesterday was a great day for people living with FA in Ireland, as the
- [Biogen announces plans to start their global phase 3 trial of Omaveloxolone in children aged 2-15, with sites in the UK](https://www.ataxia.org.uk/research-news/biogen-announces-plans-to-start-their-global-phase-3-trial-of-omaveloxolone-in-children-aged-2-15-with-sites-in-the-uk/) - Biogen have shared their plan to initiate their BRAVE study, a global phase 3 trial of Omaveloxolone (SKYCLARYS®) in children aged 2-15 years. The trial will study the effects and long-term safety of the drug in this population. *Update Aug 2026: this trial has now completed recruitment. The London Ataxia Centre, Sheffield Ataxia Centre and
- [Meet Nathan Lee Davies](https://www.ataxia.org.uk/your-blog/meet-nathan-lee-davies/) - This is the first of what I hope will become a regular column for me in the Ataxia UK blog. I am a 49-year-old writer who lives with Friedreich's Ataxia. I feel that my forties have been largely wasted, as I have had to spend much of this precious time battling local authorities to maintain
- [Concerts and Holidays by Clare Sheeran](https://www.ataxia.org.uk/uncategorised/concerts-and-holidays-by-clare-sheeran/) - I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47. This month, I was supposed to go to an outdoor Kings of Leon concert. Going to concerts used to be second nature to me. I didn’t think twice about them and always
- [Remote Monitoring of SCA3 Symptoms](https://www.ataxia.org.uk/research-news/remote-monitoring-of-sca3-symptoms/) - What was this study about? People with Spinocerebellar Ataxia Type 3 (SCA3) experience problems with balance, walking, coordination, and speech that gradually worsen over time. Doctors usually measure these symptoms during clinic visits using a test called the Scale for the Assessment and Rating of Ataxia (SARA). However, a single clinic visit only shows how
- [Ataxia UK-funded research shows that targeting sphingolipids protects cells from damage in cell and mouse models of FA](https://www.ataxia.org.uk/research-news/ataxia-uk-funded-research-shows-that-targeting-sphingolipids-protects-cells-from-damage-in-cell-and-mouse-models-of-fa/) - Previous research has shown that there are changes in the levels and activity of molecules known as sphingolipids in cells in Friedreich’s ataxia (FA). Since 2022, Ataxia UK has awarded two research grants to Dr Sara Anjomani Virmouni and her team at Brunel, University of London, to investigate some of the processes occurring in cells which are disrupted in Friedreich's ataxia (FA), and to study whether these
- [Update on genetic testing for SCA27B](https://www.ataxia.org.uk/research-news/update-on-genetic-testing-for-sca27b/) - Many people with ataxia do not have a specific genetic diagnosis and the cause of their ataxia is unknown. In 2023, two papers were published which identified a genetic mutation that might be a common cause of late-onset ataxia (ataxia where the start of symptoms occurs relatively late in life). This type of ataxia has
- [Shoes by Clare Sheeran](https://www.ataxia.org.uk/your-blog/shoes-by-clare-sheeran/) - I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47. I am very fortunate to still be walking. Most people have never heard of Friedreich’s Ataxia. Personally, the only way I can describe it is that, with every step, I feel as
- [Updates on the Voyager Therapeutics and Neurocrine Biosciences FA programme](https://www.ataxia.org.uk/research-news/voyager-therapeutics-and-neurocrine-biosciences-announce-selection-of-a-lead-gene-therapy-candidate-for-their-fa-program/) - On 26th February 2024, the biotechnology company Voyager Therapeutics announced that as part of their collaboration with the biopharmaceutical company Neurocrine Biosciences, they have selected a lead development candidate in their Friedreich’s Ataxia (FA) program. The candidate is a replacement for the mutated gene FXN (which codes for the protein frataxin) inside a protein shell
- [Ataxia Magazine 234](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-233-2/)
- [Research Impact Report 2026](https://www.ataxia.org.uk/research-news/research-impact-report-2026/) - The research that Ataxia UK funds has a real impact on the world of ataxia research, and our understanding of all ataxias. Every year we ask Ataxia UK-funded researchers to tell us about the outcomes of their research. The research Ataxia UK funds produces a range of outcomes, from raising further funding for ataxia research,
- [Mindfulness](https://www.ataxia.org.uk/your-blog/mindfulness/) - Our Mindfulness sessions are led by Lucy Holland. The benefits of yoga and mindfulness have been a constant in Lucy’s life for over 20 years and she has been sharing her experience through her teaching since 2017. Ataxia UK is a charity close to her family's heart and she has organised several fundraising yoga and
- [Why me?](https://www.ataxia.org.uk/your-blog/why-me/) - Supporters who leave a gift in their Will to Ataxia UK, help establish a lifeline of support to continue ataxia research and service projects. Our Friend, Sylvia White, recently left an incredibly generous gift to Ataxia UK in her Will. Her sister Judith shared some touching words with me to help us understand a little more about Sylvia’s life, and
- [Design Therapeutics RESTORE-FA trial updates page](https://www.ataxia.org.uk/research-news/first-fa-patient-dosed-in-restore-fa-trial/) - On 4th June 2025, the Biotechnology company Design Therapeutics announced that they have dosed the first person with Friedreich's ataxia (FA) in their phase 1 clinical trial of their drug DT-216P2. The study will assess the safety and effectiveness of DT-216P2 in treating FA. The drug is also being tested in healthy volunteers. This trial
- [The Sheffield Ataxia Centre experience on the use of 3,4-diaminopyridine in SCA27B ](https://www.ataxia.org.uk/research-news/the-sheffield-ataxia-centre-experience-on-the-use-of-34-diaminopyridine-in-sca27b/) - The team at the Sheffield Ataxia Centre has recently published a paper in the Journal of Neurology. To read the paper please click here. The paper details the Sheffield Ataxia Centre experience and gives some support to the potential use of 3,4-diaminopyridine as a therapy to alleviate symptoms in Spinocerebellar ataxia type 27B (SCA27B). Spinocerebellar ataxia type 27B (SCA27B) is a genetic disorder caused by a change (mutation) in the fibroblast growth factor
- [Larimar Therapeutics Announces positive results from their phase II trial of Nomlabofusp in FA](https://www.ataxia.org.uk/research-news/larimar-therapeutics-announces-positive-results-from-their-phase-ii-trial-of-nomlabofusp-in-fa/) - On 29th September 2025, the pharmaceutical company Larimar Therapeutics announced positive results from their phase II trial of the drug Nomlabofusp for FA. Nomlabofusp is designed to increase levels of the frataxin protein which is reduced in people with FA. So far, 65 people have been dosed with the drug in the trial, with 14
- [Solid Biosciences and SGT-212 gene therapy updates](https://www.ataxia.org.uk/research-news/solid-biosciences-granted-fda-rare-paediatric-disease-designation-for-their-fa-gene-therapy/) - In people with FA, a protein called frataxin is reduced. SGT-212, developed by pharmaceutical company Solid Biosciences, is designed to deliver frataxin to both the cerebellum in the brain, and to the heart. SGT-212 is the only dual route gene therapy in development to treat FA. Update from January 2025 In January 2025 Solid Biosciences announced that
- [An update on genetic testing in ataxia](https://www.ataxia.org.uk/uncategorised/an-update-on-genetic-testing-in-ataxia/) - There are many different types of ataxia, with numerous causes. For example, ataxia can be genetic, occur due to an autoimmune response (e.g. gluten ataxia) or when we do not know whathas caused an individual’s ataxia, it is called “idiopathic”. If you fall into the last category, you might still turn out to have a
- [Towards a personalised treatment for SCA1](https://www.ataxia.org.uk/research-news/towards-a-personalised-treatment-for-sca1/) - In 2022, Ataxia UK awarded funding to Dr Francesca Salvatori at the University of Ferrera in Italy, for a project focused on SCA1. Previous work SCA1 is caused by the production of a toxic version of the ataxin-1 protein. In previous work, Dr Salvatori and her team showed that they could target the SCA1 gene to reduce the expression of the ataxin-1
- [Developing audio messages to help those with ataxia when making calls](https://www.ataxia.org.uk/research-news/developing-audio-messages-to-help-those-with-ataxia-when-making-calls/) - In an Ataxia UK funded project, Dr Maria Cairney and Prof Anja Lowit at the University of Strathclyde are developing audio messages to support people with ataxia whilst making phone calls. People with ataxia can experience difficulties with their speech, and can find it hard to make themselves understood on the phone. In addition, they can sometimes
- [Vitamin D levels and Friedreich's ataxia](https://www.ataxia.org.uk/uncategorised/vitamin-d-levels-and-friedreichs-ataxia/) - This research was carried out by Prof Giunti and her team at the London Ataxia Centre at the National Hospital for Neurology and Neurosurgery using the London arm of the European Friedreich's Ataxia Consortium of Translational Studies (EFACTS) study. The study investigated the Vitamin D levels in a group of 56 people with FA. Vitamin D
- [Augmented Reality-Based Closed-Loop Rehabilitation for Postural Instability in Ataxia](https://www.ataxia.org.uk/uncategorised/augmented-reality-based-closed-loop-rehabilitation-for-postural-instability-in-ataxia/) - Title: Augmented Reality-Based Closed-Loop Rehabilitation for Postural Instability in Ataxia Principal researchers: Boubker Zaaimi (Aston University, UK), Prof Stuart Baker (Newcastle University, UK), Prof Mark Baker (Newcastle University, UK) and Dr David Punt (University of Birmingham and Birmingham Community Healthcare NHS Trust, UK). Scientific summary: Ataxia UK has recently awarded funding for a
- [Arrowhead Pharmaceuticals starts recruitment for SCA2 trial](https://www.ataxia.org.uk/research-news/arrowhead-pharmaceuticals-starts-recruitment-for-sca2-trial/) - The pharmaceutical company Arrowhead Pharmaceuticals has begun recruitment for their phase 1 randomised placebo-controlled trial of ARO-ATXN2 in adults with SCA2. The programme is a partnership with the pharmaceutical company Sarepta Therapeutics. The trial has begun recruitment in a number of countries around the world. The company is exploring possible sites in the UK. We
- [Family by Clare Sheeran](https://www.ataxia.org.uk/your-blog/family-by-clare-sheeran/) - I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47. I’ve always been very close to my family. Weirdly, I don’t want my family or friends to see me at my worst! My psychotherapist told me that I am quite happy to
- [Solaxa announces plan for phase 3 clinical trial for SCA27B](https://www.ataxia.org.uk/research-news/solaxa-announces-plan-for-phase-3-clinical-trial-for-sca27b/) - In March, the pharmaceutical company Solaxa has announced plans to conduct a phase 3 clinical trial of their drug SLX-100 (repurposed 4-aminopyridine) for Spinocerebellar ataxia 27B (SCA27B). The trial will be based in the US. We are awaiting announcement of any potential additional trial sites. Read more here. Read about 4-Aminopyridine here.
- [Volunteers Week Special - Chair Pilates](https://www.ataxia.org.uk/uncategorised/volunteers-week-chair-pilates-26/) - Our Chair Pilates sessions are led by Sonia Forde, a Pilates teacher with over 17 years’ experience. Sonia has been working with Ataxia UK for the past five years, supporting our community with accessible and engaging sessions. You can read more about Sonia’s work here. This special Chair Pilates session will take place on Tuesday
- [Research Impact Report 2025](https://www.ataxia.org.uk/research-news/research-impact-report-2025/) - The research that Ataxia UK funds has a real impact on the world of ataxia research, and our understanding of all ataxias. Every year we ask Ataxia UK-funded researchers to tell us about the outcomes of their research. The research Ataxia UK funds produces a range of outcomes, from raising further funding for ataxia research,
- [Research Impact Report 2024](https://www.ataxia.org.uk/research-news/research-impact-report-2024/) - The research that Ataxia UK funds has a real impact on the world of ataxia research, and our understanding of all ataxias. Every year we ask Ataxia UK-funded researchers to tell us about the outcomes of their research. The research Ataxia UK funds produces a range of outcomes, from raising further funding for ataxia research,
- [March 2026: Don’t Leave Me in the Dark by Clare Sheeran](https://www.ataxia.org.uk/your-blog/march-2026-dont-leave-me-in-the-dark-by-clare-sheeran/) - I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47. This month, my amazing friends organised a gala ball in aid of FARA Ireland, which is coming up this Saturday. My psychotherapist told me that I am quite happy to share a
- [Investigating The Molecular Mechanisms of SCA2 Using 3D Cerebellar Organoids and Multi-Omics Approaches: A Platform for Advancing Ataxia Research](https://www.ataxia.org.uk/uncategorised/investigating-the-molecular-mechanisms-of-sca2-using-3d-cerebellar-organoids-and-multi-omics-approaches-a-platform-for-advancing-ataxia-research/) - Upcoming project: Investigating The Molecular Mechanisms of SCA2 Using 3D Cerebellar Organoids and Multi-Omics Approaches: A Platform for Advancing Ataxia Research Principal applicants: Prof Jorgen Erik Nielsen, Senior Researcher Patrick Ejlerskov and Post doc Emil Elbaek Henriksen, Rigshospitalet, Copenhagen University Hospital (Denmark) Scientific summary: This project aims to elucidate the molecular mechanisms underlying spinocerebellar ataxia
- [Caring for people with progressive ataxia – lived experience of family carers and co-development of support mechanisms](https://www.ataxia.org.uk/uncategorised/caring-for-people-with-progressive-ataxia-lived-experience-of-family-carers-and-co-development-of-support-mechanisms/) - Caring for people with progressive ataxia – lived experience of family carers and co-development of support mechanisms Principal researchers: Prof Anja Lowit and Prof Christopher Graham, Strathclyde University, Scotland. Scientific summary: Ataxia UK has recently co-funded a PhD studentship in caring for people with progressive ataxia at Strathclyde University, Scotland, led by Prof
- [A new project studying neurostimulation in ataxia](https://www.ataxia.org.uk/research-news/a-new-project-studying-neurostimulation-in-ataxia/) - This study, based at the Institute of Neurology, University College London, is led by Neuroscientist Dr Tim West, and funded by the Royal Academy of Engineering and the Rosetrees Trust. The cerebellum is a part of the brain that plays a critical role in coordination. When the cerebellum is affected in people with ataxia this
- [Laura Mantle: Awareness for Rare Disease Day](https://www.ataxia.org.uk/your-blog/laura-mantle-awareness-for-rare-disease-day/) - My words come out much more easily when they are written rather than spoken. I have a lot to say—things I want to shout as loudly as I can—but instead, I stay silent. If I have my laptop in these moments, I’ll type pages and pages until every word inside me is out. People might
- [Friendship by Clare Sheeran](https://www.ataxia.org.uk/your-blog/friendship-by-clare-sheeran/) - I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47. I feel that being more open about my diagnosis and disability has strengthened my friendships. For a while, I avoided certain things because I felt I had to keep up a pretence.
- [Feasibility testing a double-blinded randomised cross-over trial as an independent evaluation of use of the Exopulse Mollii electrostimulation suit for people with ataxia](https://www.ataxia.org.uk/research-project/feasibility-testing-a-double-blinded-randomised-cross-over-trial-as-an-independent-evaluation-of-use-of-the-exopulse-mollii-electrostimulation-suit-for-people-with-ataxia/) - Principal researcher: Dr Lisa Bunn, Plymouth University (UK) Scientific Summary: This project directly responds to the needs expressed by people with ataxia for non-invasive treatments to improve daily life. It aims to evaluate the effectiveness of the Exopulse “Mollii” Suit, a CE-marked, neuro-modulatory wearable device, designed to enhance motor function, balance, coordination, and quality
- [Using the SPAX mobile app for measuring symptom progression in the home in spastic ataxias](https://www.ataxia.org.uk/research-news/using-the-spax-mobile-app-for-measuring-symptom-progression-in-the-home-in-spastic-ataxias/) - The European PROSPAX Consortium have shared results from their 8-week remote study of the SPAX smartphone app for tracking symptoms in spastic ataxias. About the PROSPAX project The PROSPAX consortium of patient groups, researchers and clinicians across Europe and Canada (including the UK), set up the PROSPAX project to study the progression of spastic ataxias
- [VICO Therapeutics Clinical Trial updates](https://www.ataxia.org.uk/research-news/vico-therapeutics-clinical-trial-updates/) - Spinocerebellar ataxias (SCAs) are a group of rare, progressive hereditary genetic disorders that affects the cerebellum, brain stem and spinal cord. Currently, more than 30 types of SCAs have been identified. SCAs are caused by genetic mutations, which lead to faulty proteins being produced. This causes the degeneration of different populations of neurons, depending on the type of SCA. For more information about different SCAs, please click here. VICO Therapeutics is a
- [Changes to the NICE cost-effectiveness threshold ](https://www.ataxia.org.uk/research-news/changes-to-the-nice-cost-effectiveness-threshold/) - In December 2025 the government announced that from April 2026 it will increase the standard NICE cost-effectiveness thresholds, which are used when evaluating new medicines for use in the NHS, from £20,000 - £30,000 to £25,000 - £35,000. Notably, the threshold has not changed since the inception of NICE. NICE analysis estimates that this will mean an additional 3 - 5 new medicines or indications will be approved per year. NICE currently use the EQ-5D-5L as the health-related quality of life tool.
- [New paper published on the SARAhome scale to remotely assess ataxia symptoms in SCA3](https://www.ataxia.org.uk/research-news/new-paper-published-on-the-sarahome-scale-to-remotely-assess-ataxia-symptoms-in-sca3/) - In 2021, Ataxia UK co-funded a research project with the National Ataxia Foundation, ‘Assessment of ataxia severity under real-life conditions with SARAhome: A multicenter study in spinocerebellar ataxia type 3 (SCA3)’. This project was led by Dr Marcus Grobe-Einsler and Dr Thomas Klockgether at the German Center for Neurodegenerative Diseases. Following this project, the researchers have published a new paper about SARAhome. SARAhome is an at-home version of the SARA scale, which uses a
- [Another Year Older, Still Hopeful by Clare Sheeran](https://www.ataxia.org.uk/your-blog/another-year-older-still-hopeful-by-clare-sheeran/) - I was diagnosed with Friedreich’s ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 47. We are now into a new year. We have entered 2026, and it is also my birthday in January, so I am another year older. It does make you wonder what is
- [New paper published looking at peripheral and autonomic nervous system involvement in SCA3](https://www.ataxia.org.uk/uncategorised/new-paper-published-looking-at-peripheral-and-autonomic-nervous-system-involvement-in-sca3/) - Spinocerebellar ataxia type-3 (SCA3) is one of the most common types of SCA worldwide, and is characterised by progressive decline in daily function and quality of life. Whilst cerebellar ataxia is the main feature of the condition, there are many non-motor and non-cerebellar features that contribute to the disease burden. These include symptoms relating to
- [Ataxia UK and CureDRPLA provided feedback regarding the scope of a framework under development for individualised treatments in the UK](https://www.ataxia.org.uk/research-news/ataxia-uk-and-curedrpla-provided-feedback-regarding-the-scope-of-a-framework-under-development-for-individualised-treatments-in-the-uk/) - NHS England opened a consultation to seek feedback on an operational framework they are developing to support the future use of individualised genetic therapies in the NHS in England. They invited stakeholders to comment on what we thought should and should not be included in this framework. Individualised genetic therapies are treatments specifically designed and targeted
- [MHRA publishes plans to reform medicines regulatory systems for rare diseases](https://www.ataxia.org.uk/research-news/mhra-publishes-plans-to-reform-medicines-regulatory-systems-for-rare-diseases/) - Existing medicines regulatory processes do not consider the challenges that accompany treatment development for rare diseases. The regulatory body for medicines in the UK, the MHRA, has recognised this and is planning a major change by proposing a new framework for rare diseases. We welcome their report, published on 2nd November 2025, which outlines promising plans to reform the rare disease regulatory system by the end of 2026. Their ultimate aim is faster access to treatments for people with rare diseases. The report highlights the need
- [Christmas Festivities by Clare Sheeran](https://www.ataxia.org.uk/your-blog/christmas-festivities-by-clare-sheeran/) - I was diagnosed with Friedreich’s ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 46. December is a fairly busy month, socially, for all of us. Christmas is seen as a time of year to get together with friends and family. “We must catch up over Christmas”
- [New paper published on measuring treatment effectiveness in people with SCA3](https://www.ataxia.org.uk/research-news/new-paper-published-on-the-feasibility-and-validity-of-the-goal-attainment-scale-to-measure-treatment-effectiveness-in-people-with-sca3/) - Researchers Prof Bart van de Warrenburg, Dr Roderick Maas and Kristofoor Leeuwenberg at Radboud University Medical Center in the Netherlands have recently published a paper in the journal Cerebellum on their work as part of the SIMPATHIC research project. The SIMPATHIC project is a European project that aims to develop drug repurposing for rare neurological,
- [Sharing results from Ataxia UK-funded project looking at potential treatment for SCA3](https://www.ataxia.org.uk/research-news/could-the-antidepressant-vortioxetine-be-a-potential-treatment-for-sca3/) - In a project funded by Ataxia UK, Dr Andreia Teixeira-Castro (pictured left) and her team at the University of Minho, Portugal, have investigated the therapeutic potential of the anti-depressant vortioxetine to treat SCA3. Spinocerebellar ataxia type-3 (SCA3) is caused by a change in the ATXN3 gene which codes for the Ataxin-3 protein, leading to a
- [Ataxia UK-funded project shows potential for SMaRT gene therapy to treat SCA1](https://www.ataxia.org.uk/research-news/ataxia-uk-funded-project-shows-potential-for-smart-gene-therapy-to-treat-sca1/) - This project, led by Prof Karen Anthony at the University of Northampton and Dr Ronald Buijsen at Leiden University Medical Centre, aimed to evaluate the potential of targeting RNA to treat Spinocerebellar ataxia type 1 (SCA1) using a type of gene therapy called SMaRT. SCA1 is caused by a change in the Ataxin 1 gene
- [Promising results from Ataxia UK co-funded project targeting SCA3 using nanobodies](https://www.ataxia.org.uk/research-news/promising-results-from-ataxia-uk-co-funded-project-targeting-sca3-using-nanobodies/) - Dr Sandra Macedo-Ribiero of the University of Porto, Portugal, has shared results from her project co-funded by Ataxia UK, ‘NanoSCA3: Development of brain-targeted nanobodies for application in spinocerebellar ataxia type 3 therapy’. Read more about the project here. SCA3 is caused by a defect in a gene, which causes a protein, called ataxin-3, to become
- [The Sheffield Ataxia Centre’s 2025 ataxia study day for healthcare professionals](https://www.ataxia.org.uk/research-news/the-sheffield-ataxia-centres-2025-ataxia-study-day-for-healthcare-professionals/) - Last month, on 7th November, the Ataxia UK-accredited Sheffield Ataxia Centre hosted an ataxia study day for healthcare professionals at the University of Sheffield, chaired by Consultant Neurologists Professor Marios Hadjivassiliou and Dr Priya Shanmugarajah, and organised by Emma Foster (Specialist Ataxia Nurse). The national study day was focused on "The Diagnosis and Management of Gluten Sensitivity related Neurological Disorders". Ataxia UK’s Southwest Specialist Ataxia Nurse, Camilla Notley,
- [Watch the 2025 DRPLA Research Update on YouTube](https://www.ataxia.org.uk/research-news/watch-the-2025-drpla-research-update-on-youtube/) - We run the DRPLA Research Programme in partnership with CureDRPLA and every year we provide a research update for non-scientists. Watch the 2025 recap in which Dr Silvia Prades provides an update on the work carried out to date including N-of-1 trials, DRPLA Natural History and Biomarkers Study, Patient Registry and other relevant news and
- [Reflections on the 2025 Euro-ataxia conference](https://www.ataxia.org.uk/research-news/reflections-on-the-2025-euro-ataxia-conference/) - On October 28th-29th 2025, Euro-ataxia hosted the International Ataxia Patient Conference in Amsterdam. This two-day event was attended by representatives from 18 ataxia patient organisations from Europe and North America. We were also joined by representatives from six pharmaceutical companies, and a number of ataxia researchers. We heard updates on clinical programmes on a range
- [Sharing results from Ataxia UK-funded project on restoring NKX6-2 gene function in Spastic Ataxia 8 cells in the lab](https://www.ataxia.org.uk/research-news/sharing-results-from-ataxia-uk-funded-project-on-restoring-nkx6-2-gene-function-in-spastic-ataxia-8-cells-in-the-lab/) - Dr Federico Herrera of the University of Lisbon, Portugal, has recently shared results of his Ataxia UK-funded project, ‘Restoring NKX6-2 function by protein complementation: a proof-of-concept’. Spastic ataxia 8 (SPAX8) is caused by mutations in a gene called NKX6-2 that result in the formation of incomplete NKX6-2 proteins which are missing fragments. This leads to
- [New paper published on TG6 antibodies and patient outcomes in Gluten-related neurological disorders](https://www.ataxia.org.uk/research-news/new-paper-published-on-tg6-antibodies-and-patient-outcomes-in-gluten-related-neurological-disorders/) - Gluten-related disorders, also known as gluten sensitivity disorders, happen when a person's immune system reacts to gluten, and immune cells called autoantibodies, mistakenly attack the body's tissues. This is called an autoimmune response. There are numerous autoantibodies that can be produced in response to gluten. Some gluten-related conditions affect the nervous system (brain and nerves), such as Gluten ataxia. These are called neurological gluten-related disorders. In Gluten ataxia, it is
- [Ataxia UK-funded project shows that mitochondrial proteins may be a potential target to treat cellular stress in Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/ataxia-uk-funded-project-shows-that-mitochondrial-proteins-may-be-a-potential-target-to-treat-cellular-stress-in-friedreichs-ataxia/) - Dr Rosella Abeti and Prof Paola Giunti at the London Ataxia Centre, UCL Institute of Neurology, have shared results from their project which was funded by Ataxia UK. The project was titled ‘Exploring novel iron-mediated mechanisms to prevent cellular death in Friedreich's Ataxia’. Friedreich’s ataxia (FA) is a rare genetic condition that causes progressive damage to the nervous system and heart. People with FA have decreased
- [Sharing results from Ataxia UK-funded project to aiming to model ARSACS in the lab](https://www.ataxia.org.uk/research-news/sharing-results-from-ataxia-uk-funded-project-to-aiming-to-model-arsacs-in-the-lab/) - Dr Federico Herrera, based at the University of Lisbon, Portugal, has recently shared the results of his Ataxia UK-funded project, ‘Towards a pharmacological model of Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS)’. ARSACS is a rare form of ataxia caused by the loss of function of a protein called sacsin, which is thought to be
- [Researchers identify potential new biomarker of FA disease progression](https://www.ataxia.org.uk/research-news/researchers-identify-potential-new-biomarker-of-fa-disease-progression/) - Heart problems can be a symptom of Friedreich’s ataxia (FA). In 2022, Prof Richard Festenstein of Imperial College London received a grant from Ataxia UK to generate a heart cell model in FA in order to understand why FA affects the heart. To do this, Prof Festenstein and his team used blood stem cells taken
- [Acts of Kindness by Clare Sheeran](https://www.ataxia.org.uk/your-blog/acts-of-kindness-by-clare-sheeran/) - Nov 2025 – Acts of Kindness I was diagnosed with Friedreich’s Ataxia at the age of 44 after experiencing symptoms for a couple of years. I am now 46. One thing I have found over the last couple of years is that I really have to force myself to do things that make me uncomfortable
- [Reflections on the 2025 Clinical Trials in Ataxias Conference](https://www.ataxia.org.uk/research-news/reflections-on-the-2025-clinical-trials-in-ataxia-conference/) - On October 27th-28th 2025, representatives from Ataxia UK attended the first Clinical Trials in Ataxia (CTAX) conference in Amsterdam. CTAX was organised by Ataxia UK, the National Ataxia Foundation (NAF), the Friedreich’s ataxia research alliance (FARA), and the Ataxia Global Initiative (AGI). The conference was attended by 120 invited researchers, patient group representatives, pharmaceutical
- [Ataxia Magazine 232](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-232/)
- [Pre-implantation genetic testing approved to diagnose SCAN3](https://www.ataxia.org.uk/research-news/pre-implantation-genetic-testing-approved-to-diagnose-scan3/) - The Human Fertilisation and Embryology Authority (HFEA), the UK's independent regulator of fertility treatment and research using human embryos, has licensed Pre-implantation Genetic Testing (PGT) to diagnose a rare form of ataxia, Spinocerebellar Ataxia, Autosomal Recessive, with Axonal Neuropathy 3 (SCAN3). PGT involves checking the genes or chromosomes of your embryos in a lab for a
- [International Ataxia Awareness Day 2025](https://www.ataxia.org.uk/ataxia-uk-news/international-ataxia-awareness-day/) - A recent poll showed that only 10% of the UK population have heard of ataxia. On 25th September every year, we ask our Friends to get involved and help spread the word of ataxia, in a bid to up this statistic! International Ataxia Awareness Day (IAAD) is our opportunity, as the ataxia community, to change
- [FDA does not approve new drug application for troriluzole for spinocerebellar ataxias](https://www.ataxia.org.uk/research-news/fda-does-not-approve-new-drug-application-for-troriluzole-for-spinocerebellar-ataxias/) - In September 2024 Biohaven announced positive results from their study of troriluzole to treat SCA 1, 2, 3, 6, 7, 8 and 10. Following these results they submitted a new drug application (NDA) for troriluzole for all types of SCAs to the US regulators, the FDA. Unfortunately, on 5th November 2025 Biohaven announced, via a
- [Lifestyle by Clare Sheeran](https://www.ataxia.org.uk/your-blog/lifestyle-by-clare-sheeran/) - I was diagnosed with Friedreich’s Ataxia at the age of 44, after experiencing symptoms for a couple of years. I am now 46. Life has definitely become smaller as the disease progresses. As I mentioned in a previous blog about exercise, I have become fearful of exercising outside, as my balance is quite poor and
- [Lexeo shares positive data in trial of LX2006 for FA cardiomyopathy](https://www.ataxia.org.uk/research-news/lexeo-shares-positive-data-in-trial-of-lx2006-for-fa-cardiomyopathy/) - The pharmaceutical company Lexeo Therapeutics has announced positive updates from their phase I/II trial of the gene therapy LX2006 to treat cardiomyopathy in Friedreich's ataxia (FA). Interim data has shown sustained or deepening improvements in most participants across both cardiac and neurological measures of FA. This includes clinically meaningful improvement in the modified Friedreich Ataxia
- [Managing sleep and fatigue symptoms in ataxias](https://www.ataxia.org.uk/research-news/managing-sleep-and-fatigue-symptoms-in-ataxias/) - As part of the Ataxia UK 2025 virtual annual conference, Emma Foster, Clinical Nurse Specialist at the Sheffield Ataxia Centre (pictured to the left) gave a talk on managing sleep and fatigue in ataxias. Emma introduced the session by discussing how a range of ataxia symptoms can be impacted by sleep disturbances, including balance, walking
- [Intrabio to conduct phase III trial in SCA6 and Episodic Ataxia Type-2](https://www.ataxia.org.uk/research-news/intrabio-to-conduct-phase-iii-trial-in-sca6-and-episodic-ataxia-type-2/) - The pharmaceutical company Intrabio, who developed the recently FDA-approved drug AQNEURSA for people with Niemann-Pick Disease Type C, has announced their plans to begin a phase III trial of the drug in SCA6 and EA2. In September 2024, the US drug regulator the FDA approved their symptom-relief drug AQNEURSA (levacetylleucine) for the treatment of Niemann-Pick
- [Winter is Coming by Clare Sheeran](https://www.ataxia.org.uk/your-blog/winter-is-coming-by-clare-sheeran/) - Winter is Coming by Clare Sheeran I was diagnosed with Friedreich’s ataxia at the age of 44; I am now 46. This monthly blog is just my ramblings and musings on life with late-onset FA. There has been a bit of a change in the weather, so this month I am starting to think about
- [Ataxia Magazine 231](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-231/)
- [Spastic Ataxia Composite (SPAXCOM): a scale to evaluate disease progression in people with spasticity and ataxia](https://www.ataxia.org.uk/research-news/spastic-ataxia-composite-spaxcom-a-scale-to-evaluate-disease-progression-in-people-with-spasticity-and-ataxia/) - Current clinical rating scales to measure disease progression in people with spasticity and ataxia are focused solely on either spasticity symptoms (stiffness of muscles leading to involuntary spasms) or ataxia symptoms, not both. This is despite the fact that they can occur together. With this in mind, as part of the European PROgression chart of
- [Celebrating the impact of Ataxia UK-funded research](https://www.ataxia.org.uk/research-news/celebrating-the-impact-of-ataxia-uk-funded-research/) - Ataxia UK funds research that aims to find treatments and cures for the ataxias. This would not be possible without your continued generosity in donating to support this mission. Thank you to each and every person who has donated to fund ataxia research. For every £1 invested by Ataxia UK into ataxia research, a further
- [Paper published on study of effectiveness of omaveloxolone for Friedreich’s ataxia using natural history study data](https://www.ataxia.org.uk/research-news/results-released-from-moxie-extension-trial-of-omaveloxolone-for-friedreichs-ataxia/) - The natural history of Friedreich’s ataxia (FA) has been studied as part of a project called the Friedreich’s ataxia Clinical Outcome Measures Study (FACOMS). Natural history studies track the course of a condition to identify demographic, genetic, environmental, and other variables (e.g., treatments, concurrent medications) that correlate with the disease’s development. Natural history studies tend
- [New paper published on promising speech therapy programme for people with Cerebellar Multiple System Atrophy](https://www.ataxia.org.uk/research-news/new-paper-published-on-promising-speech-therapy-programme-for-people-with-cerebellar-multiple-system-atrophy/) - Prof Anja Lowit, Speech and Language Therapist based Strathclyde University, Glasgow, together with Prof Marios Hadjivassiliou from the Sheffield Ataxia Centre have published a new research paper looking at a potential form of speech therapy for people with the cerebellar form of Multiple System Atrophy (MSA-C). Prof Lowit has been awarded a number of grants
- [Finding Strength in Small Things by Clare Sheeran](https://www.ataxia.org.uk/your-blog/finding-strength-in-small-things-by-clare-sheeran/) - I am totally aware that Friedreich’s Ataxia can really get you down. I am also very aware that late-onset is very different from when you develop symptoms at a young age. The physical effects are less severe, so I am very conscious of this. But I do believe that, at least for me, trying to
- [Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns](https://www.ataxia.org.uk/research-project/subtyping-hereditary-cerebellar-ataxias-based-on-multimodal-disease-progression-patterns-subtyping-hereditary-cerebellar-ataxias-based-on-multimodal-disease-progression-patterns/) - Upcoming project: Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns Subtyping Hereditary Cerebellar Ataxias based on multimodal disease progression patterns Principal investigators: Dr Susmita Saha, Prof Nellie Georgiou-Karistianis, Prof Ian Harding and Dr Thiago Rezende, Monash University (Australia) Scientific summary: Structural and diffusion MRI studies have identified distinct patterns of neurodegeneration in SCA3
- [Co-designing audio support messages with and for people with ataxia: a telephone version of the “I’m not drunk” ID card](https://www.ataxia.org.uk/uncategorised/co-designing-audio-support-messages-with-and-for-people-with-ataxia-a-telephone-version-of-the-im-not-drunk-id-card/) - Upcoming project: Co-designing audio support messages with and for people with ataxia: a telephone version of the “I’m not drunk” ID card Principal Investigators: Dr Maria Cairney and Prof Anja Lowit, University of Strathclyde (UK) Scientific summary: People with ataxia often experience communication challenges as a result of speech difficulties. Their speech can sound slurred
- [Genetic treatment protects against DRPLA symptoms in a mouse model with DRPLA](https://www.ataxia.org.uk/research-news/genetic-treatment-protects-against-drpla-symptoms-in-a-mouse-model-with-drpla/) - Scientists created a mouse model with the genetic change that causes DRPLA in people. These mice showed symptoms common of DRPLA, such as balance problems, seizures, tremors, and poor coordination. When the mice were treated with a type of genetic therapy called antisense oligonucleotides, researchers observed that the treatment protected them from many of these
- [Strengthening ties with Japan’s rare disease community](https://www.ataxia.org.uk/research-news/strengthening-ties-with-japans-rare-disease-community/) - As part of our partnership with CureDRPLA we have been building connections with the scientific and clinical community in Japan because DRPLA, a rare form of ataxia, is more prevalent there. On July 22, Dr Silvia Prades welcomed Dr Jiro Ezaki to the Ataxia UK office in London. Dr Ezaki is a Deputy Director at
- [Scottish Rare Disease Advice Service](https://www.ataxia.org.uk/research-news/scottish-rare-disease-advice-service/) - Ataxia UK is thrilled to be working in partnership with Parkhead CAB in Glasgow to provide a new Scottish Advice Service, tailored to meet the needs of people affected by ataxia in Scotland. Research has shown that mainstream advice services do not successfully meet the needs of the Ataxia Community, due to a lack of
- [NfL may be a potential biomarker in Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/nfl-may-be-a-potential-biomarker-in-friedreichs-ataxia/) - New research that stemmed from a collaboration between the London Ataxia Centre and the Children’s Hospital of Philadelphia has identified the raise of a protein called NfL, as a potential early biomarker of Friedreich’s ataxia (FA). The study was funded by the US organisation Friedreich’s Ataxia Research Alliance (FARA) and the Biomedical Research Centre at
- [Life with Late-Onset – Social Life by Clare sheeran](https://www.ataxia.org.uk/your-blog/life-with-late-onset-social-life-by-clare-sheeran/) - At the age of 44, two years ago, I was diagnosed with Friedreich’s Ataxia after experiencing symptoms for a couple of years. Until then, my life was very full. I had a wonderful social life; I loved going out for dinner or to music gigs. I was even on dating sites and enjoyed meeting new
- [Cerebellar Ataxia in Athens: Living the Experience I Never Imagined Possible by Laura Mantle](https://www.ataxia.org.uk/your-blog/cerebellar-ataxia-in-athens-living-the-experience-i-never-imagined-possible-by-laura-mantle/) - I’ve written blogs for Ataxia UK before, but in case people don’t know me, I’m Laura. I was diagnosed with Cerebellar Ataxia when I was 17 and thought that my life was over. Three years later, I’ve just finished my second year of university studying psychology and have realised that my life is not over.
- [Transcranial brain stimulation can improve symptoms in SCA3](https://www.ataxia.org.uk/research-news/transcranial-brain-stimulation-can-improve-symptoms-in-sca3/) - A recent paper published in the scientific journal Cell Reports Medicine has shown that a type of non-invasive brain stimulation called transcranial alternating current stimulation (tACS) provides benefits to people with SCA3. tACS is a procedure that applies alternating electrical currents to a person’s scalp, creating an electric field in the brain that modulates brain
- [When Everything Changed: Navigating Life with Patrick’s SPG7 Diagnosis](https://www.ataxia.org.uk/your-blog/when-everything-changed-navigating-life-with-patricks-spg7-diagnosis/) - By 2021, my partner Patrick was leading a full and active life. He had worked hard all over the country and in his spare time enjoyed gardening, rambling, and cycling. He was fit, independent, and full of energy. Later that year, he was involved in a car accident on the motorway. Luckily, he walked
- [Living On, Working On: Clare’s Life with Late-Onset Friedreich’s Ataxia](https://www.ataxia.org.uk/your-blog/test/) - I do realise that late-onset is a different beast and that most people who develop Friedreich’s Ataxia (FA) at a young age have more severe symptoms, and some may not be able to work a regular office job. I am very fortunate to be still working in an office full-time. I work as a marketing
- [Antioxidants as a potential therapy for Friedreich's ataxia](https://www.ataxia.org.uk/research-news/antioxidants-as-a-potential-therapy-for-friedreichs-ataxia/) - Ataxia UK has funded a number of research projects in Friedreich's ataxia (FA) by Dr Sara Anjomani-Virmouni, a researcher based at Brunel University, London. As a result of this funded research, Dr Anjomani-Virmouni has recently published a scientific paper looking at the effects of antioxidants in cell models of FA. Friedreich’s Ataxia (FA) is caused
- [Ataxia Magazine 230](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-230/)
- [Biohaven withdraws Troriluzole application to EMA for Spinocerebellar ataxias](https://www.ataxia.org.uk/research-news/biohaven-withdraws-troriluzole-application-to-ema-for-spinocerebellar-ataxias/) - In March, Biohaven shared that they have taken the decision to withdraw their new drug application to the European Medicines Agency (EMA) for Troriluzole to treat adults with all Spinocerebellar ataxia (SCAs). The EMA’s Committee for Medicines Products for Human Use (CHMP) said there was insufficient evidence provided to support the new active status for
- [Ataxia UK and Realise Advocacy host webinar on access to omaveloxolone for adults aged 16 and over with FA in the UK](https://www.ataxia.org.uk/research-news/ataxia-uk-and-realise-advocacy-host-webinar-on-access-to-omaveloxolone-for-adults-aged-16-and-over-with-fa-in-the-uk/) - On Friday 23rd May, Ataxia UK hosted a webinar and Q&A on access to omaveloxolone for adults with Friedreich’s ataxia (FA) in the UK. This webinar was presented in partnership with Realise Advocacy, who have expertise in drug appraisals. This webinar covered the approval of SKYCLARYS (omaveloxolone) in the UK in April 2025, as well
- [Sign our letter to the UK Secretary of State for Health and Social Care requesting interim access to omaveloxolone for FA patients in the UK](https://www.ataxia.org.uk/research-news/sign-our-letter-to-the-uk-secretary-of-state-for-health-and-social-care-requesting-interim-access-to-omaveloxolone-for-fa-patients-in-the-uk/) - We recently shared with the community the disappointing news about that Biogen have withdrawn their application to NICE (the body that makes decisions on reimbursement of medicines in the UK) for omaveloxolone to treat adults with Friedreich's ataxia (FA). As we understand how frustrating this news is for the FA community, Ataxia UK has written
- [Living with Late Onset - Exercise and FA](https://www.ataxia.org.uk/your-blog/living-with-late-onset-exercise-and-fa/) - As FA progresses, I am getting more and more fearful about trying to go out for short walks. I know I am putting on weight. I bought a static bike/cross-trainer for that reason. So I am trying to do a bit on that and adapting to do a little more indoors unfortunately! I recently completed
- [Reflections from the International Drug Repurposing Conference 2025](https://www.ataxia.org.uk/research-news/reflections-from-the-international-drug-repurposing-conference-2025/) - On 7th and 8th May, Ataxia UK's Research Communications Officer, Scarlett Parr-Reid, attended Beacon for Rare Diseases and Remedi4All's second International Drug Repurposing Conference (IDR25), held in Amsterdam. Drug repurposing involves finding new therapeutic uses for drugs that are already approved for use in other conditions. One example of this which was showcased at IDR25
- [MHRA approves Omaveloxolone for Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/mhra-approves-omaveloxolone-for-friedreichs-ataxia/) - The UK medicines regulator (MHRA) approves the first treatment for Friedreich’s ataxia (FA), Omaveloxolone (Skyclarys). On 23 April 2025, the MHRA approved Omaveloxolone for the treatment of those aged 16 and over with FA in the UK. In response to the announcement, Ataxia UK’s Chief Executive Sue Millman says, ‘This is a huge milestone for
- [New study published on goal-directed Rehabilitation vs. Standard Care in those with hereditary Cerebellar ataxia](https://www.ataxia.org.uk/research-news/new-study-published-on-goal-directed-rehabilitation-vs-standard-care-in-those-with-hereditary-cerebellar-ataxia/) - A study led by Dr Sarah Milne at the Murdoch Children’s Research Institute, Australia, has recently been published in the journal ANNALS of Neurology. The study looked at the impact of a 30-week goal-directed rehabilitation programme for those with hereditary Cerebellar ataxia (HCA) compared with 30 weeks of standard care. The researchers compared a range
- [Living with Late Onset - Clare's Friedreich's ataxia Story](https://www.ataxia.org.uk/your-blog/living-with-late-onset-clares-story/) - Two years ago, at the age of 44, I was diagnosed with a rare condition called Friedreich’s Ataxia (FA). I had balance and speech symptoms for a few years and because 4 out of 5 of my dad’s siblings had FA (although he didn’t), I began to wonder ‘Could it be..?’ Although most people with
- [Lexeo Therapeutics provides updates on their gene therapy programme for Friedreich's ataxia cardiomyopathy](https://www.ataxia.org.uk/research-news/lexeo-therapeutics-provides-updates-on-their-gene-therapy-programme-for-friedreichs-ataxia-cardiomyopathy/) - On March 24th 2025, the pharmaceutical company Lexeo Therapeutics provided a number of updates on their phase 1/2 trial of the gene therapy drug LX2006 for Friedreich's ataxia (FA) cardiomyopathy. Cardiomyopathy is a disease of the heart involving stretching, thickening, or stiffening of the heart muscle, making it harder to pump blood around the body.
- [Larimar Therapeutics announce plans for phase 3 trial of Nomlabofusp for FA](https://www.ataxia.org.uk/uncategorised/larimar-therapeutics-announce-plans-for-phase-3-trial-of-nomlabofusp-for-fa/) - On March 24th 2025, the pharmaceutical company Larimar Therapeutics announced their plans to start conducting a phase 3 trial of their Friedreich's ataxia (FA) drug Nomlabofusp in mid-2025. This follows positive results in their phase 2 trial, which you can read about here. Data from those taking the 50mg dose of Nomlabofusp in the open-label
- [Volunteers' Week - Chair Pilates](https://www.ataxia.org.uk/uncategorised/volunteers-week-chair-pilates/) - Please fill in the booking form below to sign up to our chair pilates session as part of Volunteer's Week on Wednesday 4th June.
- [Ataxia Magazine 229](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-229/)
- [Ataxia Magazine 228](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-228/)
- [Design Therapeutics announce results from Phase 1 FA trial](https://www.ataxia.org.uk/research-news/design-therapeutics-announce-results-from-phase-1-fa-trial/) - Design Therapeutics is Biotechnology company developing DT-216, which is a potential treatment for Friedreich’s ataxia (FA). FA is caused by a change to the frataxin gene. Genes are made up of the A, T, G and C building blocks. People with FA have a high number of GAA repeats in their frataxin gene, compared
- [People with speech difficulties need your help](https://www.ataxia.org.uk/your-blog/people-with-speech-difficulties-need-your-help/) - Our Friend Ester generously spent some time sharing her experiences of ups and downs with speech therapy, and how she finally managed to receive the support she needed and deserved. “Speech therapy forces you to remember to pace yourself - not just with speech but with the ataxia in general.” - Ester, with CA Did
- [More than you can imagine - Glen](https://www.ataxia.org.uk/your-blog/more-than-you-can-imagine-glen/) - What a heart-warming and honest piece from our Friend, Glen. He wrote this article in support of Rare Disease Day 2025 campaign. Thank you, Glen, for sharing your story. This journey started around 1999-2000, and it's been a hell of a journey. I've lost then found myself, probably hundreds of times now. It started off
- [More rare than you could ever imagine - Laura](https://www.ataxia.org.uk/your-blog/more-rare-than-you-could-ever-imagine-laura/) - You may remember Laura from her previous blog posts, this time she is back with another great read. She wrote this piece in support of Rare Disease Day 2025. I knew I was rare when I was first diagnosed with ataxia. I’ve never met someone outside of my family who has previously heard of ataxia
- [Rare Disease Day 2025 - Helena](https://www.ataxia.org.uk/your-blog/rare-disease-day-2025-helena/) - Here is lovely Rare Disease Day read from Helena, who wrote about her diagnosis journey. Just before Christmas 2023, I had an MRI to check my neurological health was okay, as I’d been experiencing symptoms like a reduction in my walking ability, fatigue, and being more clumsy than usual. When my MRI results came back,
- [Ataxia care - Martha](https://www.ataxia.org.uk/your-blog/ataxia-care-martha/) - Here is a blog post from Martha, Ataxia UK Friend, where she talks about her ataxia story and ataxia care. Hi, my name is Martha, here is a piece I wrote in support of Rare Disease Day 2025. My 2 main avenues of interest were singing and golf. From 1971 - 1988 I sang opera
- [My rare disease, motherhood and me - Tallulah](https://www.ataxia.org.uk/your-blog/my-rare-disease-motherhood-and-me/) - Here is another fantastic blog post from our Friend, Tallulah, who has written about having ataxia and being pregnant. This article was shared in support of Rare Disease Day 2025. “I’ll never be a mum,” I cried as the tears rolled down my cheeks. This was the first thing I said to my neuropsychologist and
- [Our Partners](https://www.ataxia.org.uk/ataxia-uk-news/our-partners/) - Ataxia UK believes strongly in working collaboratively and thus works in partnership with a number of ataxia organisations around the world. The ataxias are rare conditions making such collaborations particularly important in the effort towards the developments of treatments for people with ataxia. We are an active member of Euro-ataxia, the federation of ataxia charities
- [Ataxia UK hosts webinar on managing ataxia symptoms, presented by Dr. Michael Parkinson of the London Ataxia Centre](https://www.ataxia.org.uk/research-news/ataxia-uk-hosts-webinar-on-managing-ataxia-symptoms-presented-by-dr-michael-parkinson-of-the-london-ataxia-centre/) - On Wednesday 5th February, Ataxia UK hosted a webinar and Q&A as part of Wellbeing Week, a week from 3rd - 7th February dedicated to providing support and information to aid the wellbeing of those affected by ataxias. This webinar focused on managing symptoms in ataxias, and was presented by Dr. Michael Parkinson, Consultant Neurologist
- [Cure Rare Disease receives funding for SCA3 gene therapy trial](https://www.ataxia.org.uk/research-news/cure-rare-disease-receives-funding-for-sca3-gene-therapy-trial/) - On February 6th, the US not-for-profit biotechnology company Cure Rare Disease announced that they have been awarded 5.69 million dollars in funding from the Californian Institute of Regenerative Medicine (CIRM) to advance gene therapy for Spinocerebellar Ataxia Type-3 (SCA3). Cure Rare Disease launched their SCA3 program in 2021 to develop a gene therapy called
- [Alterity Therapeutics announces positive results from its phase 2 trial of the drug ATH434 in MSA](https://www.ataxia.org.uk/uncategorised/alterity-therapeutics-announces-positive-results-from-its-phase-2-trial-of-the-drug-ath434-in-msa/) - On January 30th 2025, the pharmaceutical company Alterity Therapeutics announced positive data from their phase 2 placebo-controlled trial in early-stage MSA. MSA is a progressive neurological condition leading to impaired co-ordination, slowed movement and/or rigidity. There are two main types of MSA, MSA-P (Parkinson's-like subtype) and MSA-C (cerebellar subtype). In this trial, ATH434 was
- [In Conversation with Dr. Alanna Watt, lead of the Watt Lab at McGill University, Canada, on her research looking at changes in the brain in SCA6](https://www.ataxia.org.uk/research-news/in-conversation-with-dr-alanna-watt-lead-of-the-watt-lab-at-mcgill-university-canada-on-her-research-looking-at-changes-in-the-brain-in-sca6/) - Dr. Alanna Watt is an Associate Professor in the department of biology at McGill University, Canada, and has been running the Watt Lab since 2011. The Watt Lab focuses on studying the brain in Spinocerebellar Ataxia Type-6 (SCA6), and Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS) using mice. Dr. Alanna Watt gave a talk on
- [Biohaven announces positive results in their study of Troriluzole for Spinocerebellar ataxia (SCA)](https://www.ataxia.org.uk/research-news/biohaven-announces-positive-results-in-their-study-of-troriluzole-for-spinocerebellar-ataxia-sca/) - On September 23rd, 2024, the pharmaceutical company Biohaven announced positive topline results from their study of the drug Troriluzole to treat SCAs 1,2,3,6,7,8 and 10. Those with SCA who were treated with Troriluzole showed a 50 – 70% slowing of disease progression, compared to those with SCA who were untreated over a 3-year study
- [Intrabio announces FDA approval of their drug Levacetylleucine (Aqneursa) for the treatment of Niemann-Pick Disease Type C](https://www.ataxia.org.uk/research-news/intrabio-announces-fda-approval-of-their-drug-levacetylleucine-aqneursa-for-the-treatment-of-niemann-pick-disease-type-c/) - On 25th September 2024, the pharmaceutical company Intrabio announced that the FDA in the US has approved their small molecule drug Levacetylleucine for the treatment of Niemann-Pick Disease Type C (NPC). NPC is a rare lysosomal storage disorder, in which ataxia can be a presenting symptom. The FDA approval follows positive data from their phase
- [Larimar Therapeutics announces progress of the Nomlabofusp (CTI-1601) trial for Friedreich's ataxia](https://www.ataxia.org.uk/research-news/larimar-therapeutics-announces-progress-of-the-cti-1601-trial-for-friedreichs-ataxia/) - Following clearance by the US drug regulatory body the Food and Drug Administration (FDA) in July 2023, the pharmaceutical company Larimar Therapeutics has completed full enrolment and dosing of the 50 mg cohort in their US Phase 2 dose exploration trial of the drug CTI-1601 (nomlabofusp) for Friedreich’s ataxia (FA). CTI-1601 is a protein replacement
- [In conversation with London Ataxia Centre Specialist Physiotherapist, Rachel Higgins](https://www.ataxia.org.uk/research-news/in-conversation-with-london-ataxia-centre-specialist-physiotherapist-rachel-higgins/) - Rachel Higgins (BSc (Hons) MCSP) is a Clinical Specialist Neurological and Vestibular Physiotherapist at The National Hospital for Neurology and Neurosurgery (NHNN). She has worked within the field of neurology since 2014 and is part of the multidisciplinary team at the London Ataxia Specialist Centre. What is your day-to-day job like at the Ataxia Centre?
- [PROSPAX Consortium publishes results from their 4-year project on spastic ataxias, with more to come](https://www.ataxia.org.uk/research-news/prospax-consortium-publishes-results-from-their-4-year-project-on-spastic-ataxias-with-more-to-come/) - About the PROSPAX project The PROSPAX consortium of patient groups, researchers and clinicians across Europe and Canada (including the UK), set up the PROSPAX project to study the progression of spastic ataxias over time, in a rigorous and harmonised way - from the clinical to the molecular level. This has included clinical, imaging, digital-motor and
- [Paper published on the impacts of ataxia symptoms on mental health](https://www.ataxia.org.uk/research-news/paper-published-on-the-impacts-of-ataxia-symptoms-on-mental-health/) - In this study, researchers at the University of Southampton looked at the impact of ataxia symptoms on self-reported mental wellbeing in adults in the UK. They compared findings, collected from an online survey, between different ataxias and between the ataxia group and a group of healthy controls. Understanding the link between ataxia symptoms and mental
- [Highlights of the International Congress for Ataxia Research 2024](https://www.ataxia.org.uk/research-news/highlights-of-the-international-congress-for-ataxia-research-2024/) - The International Congress for Ataxia Research (ICAR) 2024 took place in London from 12th – 15th November. It was organised by Ataxia UK, the National Ataxia Foundation, the Friedreich's Ataxia Research Alliance, and the Ataxia Global Initiative. This was the biggest ICAR yet, with 600 in-person attendees and 50 attending online from 32 countries, including
- [Ataxia patient organisations united at the 2024 Euro-ataxia annual conference](https://www.ataxia.org.uk/research-news/ataxia-patient-organisations-united-at-the-2024-euro-ataxia-annual-conference/) - Euro-ataxia, of which Ataxia UK is an active member, is the federation of 22 European ataxia patient organisations. The 2024 Euro-ataxia conference took place in London on 15th-16th November, organised by Ataxia UK. The conference was a great success; fourteen ataxia patient groups, as well as researchers and pharmaceutical representatives gathered to share best practice
- [Bongo: the online racing community ](https://www.ataxia.org.uk/your-blog/bongo-the-online-racing-community/) - Our Friend, Philip, is part a lovely online racing community called ‘Bongo’ and he has chosen to write about his journey. My name is Philip, and I am 55 years old. I was diagnosed with SCA6 in 2018. My Mum and auntie also have SCA6. I live alone with my dog Wilson. I have two grown
- [Thanks to my ataxia, I am now more strong-willed - Ali](https://www.ataxia.org.uk/uncategorised/thanks-to-my-ataxia-i-am-now-more-strong-willed-ali/) - Our Friend, Ali, is back with a great bog post. In this piece, he talks about the importance of raising awareness and not being afraid. It’s very important to raise awareness about ataxia by reaching out to those around us. We have to show the community that we exist, and we can only do this
- [Ataxia Magazine 227](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-227/)
- [I  am Independent and I am not trapped - Suzanne Masters](https://www.ataxia.org.uk/uncategorised/i-am-independent-and-i-am-not-trapped/) - After recovering from brain cancer at 29, Suzanne’s life was forever altered by ataxia, a rare neurological disorder. But she refuses to be defined by her limitations, in her own words. life before ataxia Suzanne was like most twentysomethings – bright, confident and hopeful, always wearing a smile and never a cross word. Working as
- [This isn't just surviving, this is living a full, vibrant life - Mohammad Shahid](https://www.ataxia.org.uk/uncategorised/this-isnt-just-surviving-this-is-living-a-full-vibrant-life-mohammad-shahid/) - Here is a blog post from our Friend, Mohammad, who talks about his ataxia journey. Ataxia threw a curveball at my life, but here's the thing – it didn't strike me out. In fact, it gave me a unique perspective, a chance to truly **live twice**. One aspect of my life was that I was
- [International Ataxia Awareness Day 2024 - Laura Mantle](https://www.ataxia.org.uk/your-blog/international-ataxia-awareness-day-2024-laura-mantle/) - Here a blog post from our Friend, Laura, in support of this year's International Ataxia Awareness Day. I don’t expect many people to know that the 25th of September is International Ataxia Awareness Day- I don’t think I’ve met a single person who has heard of ataxia before (unless they were a health professional to
- [Ataxia UK hosts an educational webinar on the UK medicines approval process](https://www.ataxia.org.uk/latest-news/ataxia-uk-hosts-an-educational-webinar-on-the-uk-medicines-approval-process/) - On 12th July Ataxia UK hosted a webinar on how medicines get approved for use in the UK and how decisions are made on their funding in the NHS. The webinar was well received. The webinar explains how patient groups such as Ataxia UK and people affected with ataxia can get involved and have an
- [In conversation with the London Ataxia Centre Speech and Language Therapist, Lucie Hogger](https://www.ataxia.org.uk/research-news/in-conversation-with-the-london-ataxia-centre-speech-and-language-therapist-lucie-hogger/) - Recently, our research intern Scarlett Parr-Reid sat down with Lucie Hogger, Speech and Language Therapist at the London Ataxia Centre to talk about the speech and language therapy services offered at the centre, and the research taking place into this aspect of ataxias. Lucie Hogger has worked in adult speech and language therapy since 2008
- [My Pet and Me - Harriet Brown](https://www.ataxia.org.uk/your-blog/my-pet-and-me-2/) - Harriet Brown, a Trustee of Ataxia UK who has idiopathic cerebellar ataxia tells us about her dog, Henry. Henry is our 2 ½ year-old cocker spaniel. He came to live with us when he was 7 months old shortly after our 14-year-old chocolate labrador, Alfie, sadly had to be put down. It was a little
- [Satisfaction is significantly higher in those attending UK specialist ataxia centres compared with those who do not, new paper shows](https://www.ataxia.org.uk/research-news/satisfaction-is-significantly-higher-in-those-attending-uk-specialist-ataxia-centres-compared-with-those-who-do-not-new-paper-shows/) - Ataxia UK has worked closely with the London Ataxia Centre researchers and other experts on a research study assessing the impact of specialist ataxia centres in Europe. This was part of the Value of Treatment (VoT) project supported by the European Brain Council, a non-profit organisation which promotes brain research to improve the lives of
- [In conversation with Dr. Federico Herrera part 2](https://www.ataxia.org.uk/research-news/in-conversation-with-dr-federico-herrera-part-2/) - Our Research Intern, Scarlett Parr-Reid, sits down with Dr. Federico Herrera (pictured below) for the second part of a two-part interview series, to discuss his team’s research project at the University of Lisbon, on ARSACS, which was recently funded by Ataxia UK. Could you describe what ARSACS is, and what causes this type of ataxia?
- [Seelos Therapeutics has stopped their phase 2/3 trial of Trehalose for SCA3](https://www.ataxia.org.uk/research-news/seelos-therapeutics-has-stopped-their-phase-2-3-trial-of-trehalose-for-sca3/) - On 1st December 2023, the pharmaceutical company Seelos Therapeutics announced they had stopped their phase 2/3 programme known as STRIDES, which had been investigating a new drug for Spinocerebellar Ataxia Type-3 (SCA3)/ Machado-Joseph Disease, known as Trehalose. Seelos had planned to recruit 245 people with SCA3 to their phase 2/3 randomised study looking at the
- [Trehalose in SCA3](https://www.ataxia.org.uk/research-news/trehalose-in-sca3/) - A recent study led by a group of researchers in Portugal tested the effect of trehalose on an animal model of SCA3.
- [Ataxia Magazine 226](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-226/)
- [All About Ataxia PLUS Your Mental Health](https://www.ataxia.org.uk/uncategorised/aaa-your-mental-health/) - Thursday 12 September 6pm-7pm We invite you to participate in our upcoming session, All About Ataxia PLUS Your Mental Health, on Thursday, 12 September, from 6-7pm. This session has been developed by Rareminds in collaboration with individuals from the ataxia community, ensuring it addresses the unique challenges faced by those living with ataxia. During the
- [Living with the challenges of ataxia - Monika](https://www.ataxia.org.uk/your-blog/living-with-the-challenges-of-ataxia-monika/) - Hey everyone, my name is Monika. I am a 47-year-old widow, and I would like to share my journey of living with Cerebellar ataxia, a genetic condition that has profoundly impacted my life. I inherited my ataxia from my father, whose mother also had it. It was a shock; I was never good at sports
- [All About Autoimmune and Gluten ataxia - Carol](https://www.ataxia.org.uk/your-blog/all-about-autoimmune-and-gluten-ataxia/) - An overview of the ataxias: Hi, I’m Carol, and I run the “Gluten Ataxia and Autoimmune” support group as a volunteer for Ataxia UK. I am not a medical professional, but a person who had a diagnosis of ‘possibly ataxia’ desperate for answers and found out what I could about gluten ataxia. There is a
- [Matt’s Trip to Japan](https://www.ataxia.org.uk/uncategorised/matts-trip-to-japan/) - Our Friend, Matt, travelled to Japan in March. Here is a piece he wrote about his awesome time in Japan, where he talks about the richness of the Japanese culture, Japan’s accessibility, and his adventures. Following my diagnosis with Friedreich’s ataxia in October 2021, international travel isn’t something that I’ve embraced. Airports, queues, crowds, and
- [All About Autoimmune and Gluten ataxia - part 2](https://www.ataxia.org.uk/uncategorised/all-about-autoimmune-and-gluten-ataxia-part-2/) - Tests at Sheffield hospital Hi, I’m Carol and I run the “Gluten Ataxia and Autoimmune” support group as a volunteer. I am not a medical professional, but someone with a diagnosis of ‘possibly ataxia’ who was desperate to find out more about my condition. If your local specialist suspects ataxia but does not know what
- [Chase Your Dreams - Ali](https://www.ataxia.org.uk/your-blog/chase-your-dreams/) - Here is another fantastic blog post from our friend Ali. In his blog post, Ali talks about the importance of staying positive and believing in yourself. I’m calling out to all my newly ataxians: please do not be pessimistic and avoid all the negative thoughts. I can’t stress enough the importance of enjoying the moment
- [Lexeo announces positive results from their phase 1/2 clinical trial programme for FA cardiomyopathy](https://www.ataxia.org.uk/research-news/lexeo-announces-positive-results-from-their-sunrise-fa-trial-of-lx2006-for-fa-cardiomyopathy/) - Lexeo Therapeutics is a pharmaceutical company developing a gene therapy called LX2006 for people with Friedreich’s ataxia (FA) hypertrophic cardiomyopathy (disease of the heart involving stretching, thickening, or stiffening of the heart muscle, making it harder to pump blood around the body). Frataxin is a protein that is deficient in people with FA. LX2006 is
- [Ataxia UK hosts Webinar on UK approval process for Skyclarys in adults with FA](https://www.ataxia.org.uk/research-news/ataxia-uk-hosts-webinar-on-uk-approval-process-for-skyclarys-in-adults-with-fa/) - On 23rd July, Ataxia UK hosted a webinar and Q&A on the UK approval process for Omaveloxolone (Skyclarys) in adults with FA. This was in partnership with the consultancy Realise Advocacy, specialists in the area of drug approvals. The webinar includes an overview of the UK drug approval process, and the role of patient organisations
- [I have ataxia, but ataxia doesn’t have me ](https://www.ataxia.org.uk/your-blog/i-have-ataxia-but-ataxia-doesnt-have-me/) - Our friend, Laura, has kindly shared her ataxia journey with us and wrote a little about the importance of acceptance. Hi, I’m Laura. I’m 19 and in my first year of university, studying psychology. I was diagnosed two years ago with familial Cerebellar ataxia. I did not truly realise how difficult it is to live
- [In conversation with Dr Yi Shiau Ng, Consultant Neurologist, and Clinical Senior Lecturer at Newcastle University](https://www.ataxia.org.uk/research-news/in-conversation-with-dr-yi-shiau-ng-consultant-neurologist-and-clinical-senior-lecturer-at-newcastle-university/) - Our research intern, Scarlett Parr-Reid, sits down with Dr Ng to discuss his research into mitochondrial disease and spinocerebellar ataxia type-6 (SCA6). Tell me a bit about yourself and your journey into the field of ataxia research. I’m a Consultant Neurologist with research interests in natural history, outcome measures and clinical trial endpoints in hereditary
- [In conversation with Dr. Federico Herrera, Group Leader of the Cell Structure and Dynamics (CSD) Lab from the Biosystems and Integrative Sciences Institute (BioISI) at the Faculty of Sciences of the University of Lisbon (Ciências ULisboa).](https://www.ataxia.org.uk/research-news/in-conversation-with-dr-federico-herrera-group-leader-of-the-cell-structure-and-dynamics-csd-lab-from-the-biosystems-and-integrative-sciences-institute-bioisi-at-the-faculty-of-sciences-of-the-u/) - Our research intern, Scarlett Parr-Reid, sits down with Dr. Herrera to discuss his research on spastic ataxia type-8 (SPAX8). Can you share a little about yourself, your background as a researcher and how you got into the field of rare neurological disorders, specifically ataxia. My background is in cellular and molecular biology. I work in
- [Thank you to all our incredible supporters!](https://www.ataxia.org.uk/your-blog/thank-you-to-all-our-incredible-supporters/) - At Ataxia UK, our mission to improve the lives of those affected by ataxia would not be possible without the support and dedication of our incredible community. We want to take a moment to express our deepest gratitude to all our Friends for their ongoing support. In the first week of June, we celebrated Volunteers
- [You are not alone - Ali](https://www.ataxia.org.uk/your-blog/you-are-not-alone/) - Hi, it’s Ali again. You might remember me from my previous blog post. Not much has changed since I shared my story with you all. The only new thing is that I am now able to do some of my daily tasks on my own. I am trying my best to keep my life standard
- [Ataxia Magazine 225](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-225/)
- [Ataxia Magazine 224](https://www.ataxia.org.uk/ataxia-magazine/magazine-224/)
- [PROSPAX Consortium publishes two new research papers](https://www.ataxia.org.uk/research-news/prospax-consortium-publishes-two-new-research-papers/) - The PROSPAX Consortium has recently published two new research papers as part of the PROSPAX project, an international project that aims to better understand how spastic ataxias progress over time to prepare well-designed treatment trials for these conditions. This is called 'trial-readiness'. In the first paper, researchers aimed to find a diagnostic tool derived
- [Celebrating World Wellbeing Week  ](https://www.ataxia.org.uk/your-blog/celebrating-world-wellbeing-week/) - World Wellbeing Week is from 24th to 30th June, it’s a perfect time to reflect on the importance of wellbeing, especially within the ataxia community. We understand that living with ataxia can bring unique challenges, but we also know that focusing on your wellbeing can make a significant difference in your quality of life. We
- [LUCKY TO BE LOVED](https://www.ataxia.org.uk/your-blog/lucky-to-be-loved/) - Here is a fantastic blog post from our wonderful Friend, Tallulah. She talks about love and self-worth. As she puts it, "I talk about my own preconceptions, my internalized ableism and the hurtful assumption that the disabled community cannot have loving and meaningful connections". Like many young girls I fantasized about falling in love, about
- [Observe a Research Ethics Committee meeting ](https://www.ataxia.org.uk/latest-news/observe-a-research-ethics-committee-meeting/) - The NHS Health Research Authority (HRA), are an independent arm’s length body of the Department of Health and Social Care. Their core purpose is to protect and promote the interests of patients and the public in health and social care research. They are currently reaching out to charities and patient representative organisations like Ataxia UK
- [Testing an experimental treatment for DRPLA and possible benefits for other rare ataxias](https://www.ataxia.org.uk/research-news/testing-an-experimental-treatment-for-drpla-and-possible-benefits-for-other-rare-ataxias/) - Ataxia UK started a partnership with CureDRPLA in March 2020 with the mission of advancing research for the very rare ataxia Dentatorubral-Pallidoluysian Atrophy (DRPLA) and finding potential treatments. With funding from CureDRPLA, Ataxia UK was able to employ a Research Manager, Dr Silvia Prades, to focus solely on the DRPLA programme. Earlier this year, we
- [In Conversation with London Ataxia Centre Consultant Neurologist, Professor Paola Giunti](https://www.ataxia.org.uk/research-news/in-conversation-with-london-ataxia-centre-consultant-neurologist-professor-paola-giunti/) - Professor Paola Giunti is an award-winning Consultant Neurologist. She has specialised in ataxias for over 30 years, and set up the London Ataxia Centre in 2005. At the London Ataxia Centre, Prof Giunti has led clinical and lab-based research at the UK's only site for EU-wide natural history studies of the progression of FA and
- [Pre-implantation Genetic Testing licensed in UK for SCAR17](https://www.ataxia.org.uk/research-news/pre-implantation-genetic-testing-licensed-in-uk-for-scar17/) - The Human Fertilisation and Embryology Authority (HFEA) is the UK's independent regulator of fertility treatment and research using human embryos. They have licensed Pre-implantation Genetic Testing (PGT) to diagnose a rare ataxia, Autosomal Recessive Spinocerebellar Ataxia Type-17. PGT involves checking the genes or chromosomes of your embryos in a lab for a specific genetic condition.
- [Study identifies gene that causes SCA4](https://www.ataxia.org.uk/research-news/study-identifies-gene-that-causes-sca4/) - A multinational research team led by University of Utah researchers has identified the gene that causes a rare type of late-onset ataxia called Spinocerebellar Ataxia Type-4 (SCA4). This discovery paves the way for future treatments for the condition. The results of the study, led by Professor Stefan Pulst at University of Utah, were published in the
- [Alterity Therapeutics presents data on the potential of ATH434 to treat FA](https://www.ataxia.org.uk/research-news/alterity-therapeutics-presents-data-on-the-potential-of-ath434-to-treat-fa/) - The biotechnology company Alterity Therapeutics presented data from their lead Friedreich’s ataxia (FA) drug candidate ATH434 at the 2024 US World Orphan Drug Congress. In FA, a genetic change in the FXN gene coding for the protein frataxin leads to reduced frataxin levels. Frataxin has an important role in using ferrous iron for energy production
- [In conversation with London Ataxia Centre Specialist Ataxia Nurse, Suzanne Booth](https://www.ataxia.org.uk/research-news/in-conversation-with-london-ataxia-centre-specialist-ataxia-nurse-suzanne-booth/) - Suzanne has worked as a neurology specialist nurse for 19 years, supporting people with a range of long-term neurological conditions. She has recently completed an MSc in Advanced Clinical Practice, and is also an APPI qualified Pilates Instructor, with a special interest in helping people of all abilities to engage in and experience the benefits
- [My pet and me](https://www.ataxia.org.uk/your-blog/my-pet-and-me/) - After the amazing presentation about assistance dogs from Dogs for Good at our Annual Conference in October 2023, we thought it would be interesting to hear from the ataxia community about what benefits and support they gain from their pets. In this article, Dawn, one of our Helpline volunteers, has very kindly written about what
- [SBT-589 may be cardioprotective in FA](https://www.ataxia.org.uk/research-news/sbt-589-may-be-cardioprotective-in-fa/) - On March 19th, the pharmaceutical company Stealth BioTherapeutics presented data on their molecule called SBT-589 in preclinical models of Friedreich’s ataxia (FA) at the Wellcome Trust Conference on Mitochondrial Medicine-Therapeutic Development. SBT-589 showed protective effects on the energy centres of cells known as the mitochondria, in both cells taken from people with FA and mitochondria
- [Stealth Biotherapeutics begins phase 1/2 trial of Elamipretide in FA](https://www.ataxia.org.uk/research-news/stealth-biotherapeutics-begins-phase-1-2-trial-of-elamipretide-in-fa/) - The US biopharmaceutical company Stealth Biotherapeutics is running a phase 1/2 trial of Elamipretide for the treatment of vision loss and cardiac disease in Friedreich’s ataxia (FA). The trial started in March 2022 and has enrolled 18 participants aged 16+ with advanced FA symptoms. Participants were enrolled through the Children’s Hospital of Philadelphia (CHOP) in
- [Anamaria's ataxia Journey](https://www.ataxia.org.uk/your-blog/anamarias-adventure/) - Here is a snippet of Anamaria's journey, she shared her story in support of the Rare Disease Day Campaign. My adventure with this condition began at the age of 16, when I started to lose my balance and got a drunken gait. Over time, I lost my reflexes, my muscle strength began to decrease, and
- [Adapting to my ataxia](https://www.ataxia.org.uk/your-blog/adapting-to-my-ataxia/) - Louise, in her blog post, explains her ataxia journey and reminds us to be inspired by our courageous resilience. My name is Louise, and I was born in Ceredigion, Wales, in 1961 to a family of six. I trained and worked as a neurology nurse in England. My father was diagnosed with cancer, which resulted
- [An interview with Netherlands-based PhD researcher Ilse Willemse, on the SPAX app for home monitoring in ARSACS and SPG7 as part of the European PROSPAX project ](https://www.ataxia.org.uk/research-news/an-interview-with-netherlands-based-phd-researcher-ilse-willemse-on-the-spax-app-for-home-monitoring-in-arsacs-and-spg7-as-part-of-the-european-prospax-project/) - The PROSPAX (PROgression chart of SPAstic ataXias) project focuses on ARSACS and SPG7, and is a collaboration between neurologists in several sites across Europe and Canada. The overall aim is to gain a better understanding of how spastic ataxias progress over time to prepare well-designed treatment trials for these conditions, that will be applicable to many of the >100 other
- [The PROSPAX Consortium publishes an infographic on their natural history study of individuals with ARSACS and SPG-7 in Europe](https://www.ataxia.org.uk/research-news/the-prospax-consortium-publishes-an-infographic-on-their-natural-history-study-of-individuals-with-arsacs-and-spg-7-in-europe/) - The PROSPAX (PROgression chart of SPAstic ataXias) project is a collaborative effort between neurologists across several sites throughout Europe and Canada. The aim is to better understand how spastic ataxias progress over time to prepare well-designed treatment trials for these conditions. This is called 'trial-readiness'. The study which focuses on Autosomal Recessive Spastic Ataxia of
- [Learning to Accept - Laura](https://www.ataxia.org.uk/your-blog/learning-to-accept/) - Our friend, Laura, has kindly shared her thoughts with us in support of the Rare Disease Day campaign. She talks about the importance of acceptance and a little about her diagnosis journey. Very few people understand how hard it is to navigate living with ataxia, and even fewer understand that it’s something that affects you
- [Ataxia Magazine 223](https://www.ataxia.org.uk/ataxia-magazine/23020/)
- [Quality of care is higher in Specialist Ataxia Centres, European study finds](https://www.ataxia.org.uk/research-news/quality-of-care-is-higher-in-specialist-ataxia-centres-european-study-finds/) - Ataxia UK worked closely with the London Ataxia Centre researchers and other experts on a research study assessing the impact of Specialist Ataxia Centres in Europe. This was part of the Value of Treatment (VOT) project supported by the European Brain Council, a non-profit organisation which promotes brain research to improve the lives of Europeans
- [Summary of my Thoughts and Fears](https://www.ataxia.org.uk/your-blog/summary-of-my-thoughts-and-fears/) - Our Friend, Alan, has contacted us following his ataxia diagnosis. Here, we bring you a story of his diagnosis, his daily life, struggles and coping mechanisms. If you find yourself in a difficult situation, our Helpline is here for you. Call 0800 995 6037 or email help@ataxia.org.uk. The Helpline is open Monday to Thursday 10.30am
- [New study shows impacts of FA on daily life, wellbeing, and relationships in those with FA and their caregivers  ](https://www.ataxia.org.uk/research-news/new-study-shows-impacts-of-fa-on-daily-life-wellbeing-and-relationships-in-those-with-fa-and-their-caregivers/) - Findings from a recent study, ‘Health-related quality of life in Friedreich Ataxia: A study of impacts on patients and caregivers’, were presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) European conference in Copenhagen, on November 12–15th 2023. The study was a collaboration between Broadstreet Health Economics and Outcomes Research in Canada, the
- [Biohaven submits application to the EMA for a new drug approval of Troriluzole for SCA3 ](https://www.ataxia.org.uk/research-news/biohaven-submits-application-to-the-ema-for-a-new-drug-approval-of-troriluzole-for-sca3/) - On October 26th 2023, the pharmaceutical company Biohaven submitted an application for a new drug approval of Troriluzole to the European Medicines Agency (EMA) for the treatment of Spinocerebellar Ataxia Type-3 (SCA3). This is being reviewed by the EMA's Committee for Medicinal Products for Human Use (CHMP), the regulatory body that makes recommendations on new
- [Childlife](https://www.ataxia.org.uk/ataxia-uk-news/childlife/) - Ataxia UK is part of Childlife, a partnership between four charities that work together to raise funds and provide support for children and their families. The charities are: Ataxia UK Acorns Children's Hospice National Children's Bureau (NCB) National Deaf Children's Society (NDCS)
- [Positive news regarding Skyclarys® approval in the EU](https://www.ataxia.org.uk/latest-news/__trashed-4/) - Ataxia UK is delighted with today’s announcement from the EMA’s Committee for Medicinal Products for Human Use (CHMP), the regulatory body that makes recommendations on drug approvals in the EU. The CHMP has recommended a market authorization for Skyclarys® for people (16 and older) with FA in the EU. The final decision will need to
- [Thank you for all your wonderful support in 2023](https://www.ataxia.org.uk/latest-news/thank-you-for-all-your-wonderful-support-in-2023/) - Friends through Volunteers to Branches & Support Groups, Fundraisers to donors, Trusts & Foundations, Researchers, and beyond… 2023 has been another challenging year, yet the camaraderie across the ataxia community and the positive news in drug and treatment developments have shone through. You, our wonderful Friends & Supporters, have done far too many fantastic things,
- [The importance of caregiving and caregivers - Trevor](https://www.ataxia.org.uk/your-blog/the-importance-of-caregiving-and-caregivers-trevor/) - Being someone’s ‘carer’ may only be part of the relationship description. You may be a parent, partner, sibling, child, grandchild, friend or other relative. This relationship can be just as, or more important to you. You may also have other caring roles, for example, taking care of your children. Or may even have a diagnosis
- [Reflecting on the 7th International ARSACS Symposium 2023](https://www.ataxia.org.uk/research-news/reflecting-on-the-7th-international-arsacs-symposium-2023/) - The 7th International Symposium on Autosomal Spastic Recessive Ataxia of Charlevoix-Saguenay (ARSACS) was held on 19th-20th October, welcoming 200 people online and in-person, from researchers to clinicians, neurologists, physiotherapists, medical students, patients and their families. The event was an opportunity to hear about the latest advancements in ARSACS research and build upon knowledge to lead
- [Results of Ataxia UK-funded study assessing speech therapy in people with progressive ataxias](https://www.ataxia.org.uk/research-news/results-of-an-ataxia-uk-funded-study-assessing-speech-therapy-in-people-with-some-types-of-ataxia/) - Research by Prof Anja Lowit and her team at Strathclyde University, Glasgow, studying the effectiveness of a new type of speech therapy for some progressive ataxias, has shown some promising results. Evidence for the effectiveness of speech treatment to improve communication for people with ataxia is steadily increasing. Over the last 5 years,
- [Ataxia UK hosts first-ever event for UK-based researchers ](https://www.ataxia.org.uk/research-news/ataxia-uk-hosts-first-ever-event-for-uk-based-researchers/) - On 12th September, Ataxia UK hosted its first networking event for UK-based researchers in London. We were excited to welcome almost 50 attendees, including researchers, clinicians, Ataxia UK representatives and two people with ataxia. Representatives from research teams across the UK attended, including the three Ataxia centres in London, Sheffield, and Oxford. We invited participants
- [New research from the Sheffield Ataxia Centre on CANVAS could help in diagnosing the condition](https://www.ataxia.org.uk/research-news/new-research-from-the-sheffield-ataxia-centre-on-canvas-could-help-in-diagnosing-the-condition/) - The team at the Sheffield Ataxia Centre, led by Prof Marios Hadjivassiliou, has been investigating whether faulty genes called RFC1 seen in a condition called CANVAS (cerebellar ataxia, neuropathy and vestibular areflexia syndrome) are present in people with ataxia of unknown cause. The RFC1 gene is needed for DNA repair in cells. A fault involving
- [Euro-ataxia hosts first in a series of webinars with Ataxia UK on gene therapy  ](https://www.ataxia.org.uk/latest-news/euro-ataxia-gene-therapy-webinar/) - On 19th September, Euro-ataxia hosted its first webinar on gene therapy as part of a new series with Ataxia UK. 70 audience members attended live, and 70 watched the recording. The webinar was presented by Dr Federica Pilotto of the Neurodegenerative Disease Laboratory, Université Claude Bernard Lyon 1. This webinar was organised as part of
- [University student joins Friedreich's ataxia research lab following his sister's FA diagnosis](https://www.ataxia.org.uk/latest-news/university-student-joins-friedreichs-ataxia-research-lab-following-his-sisters-fa-diagnosis/) - In this article, Owen Gittins, a 3rd year undergraduate student in biochemistry at the University of Cambridge, shares his journey into and involvement in Friedreich's ataxia (FA) research. My decision to pursue a career supporting the advancement of FA research is a personal one. My sister, Amy, was diagnosed with FA and I have
- [Reflections on the Ataxia UK Annual Conference 2023](https://www.ataxia.org.uk/latest-news/reflections-on-the-ataxia-uk-annual-conference-2023/) - On Friday 20th and Saturday 21st October 2023, Ataxia UK held their first ever hybrid in-person and virtual annual conference for families affected by ataxia. The conference, which took place at the Radisson Blu Hotel at East Midlands Airport, welcomed over 100 attendees, mostly those living with ataxias and their families, with a few researchers,
- [Sharing the success of the DRPLA Research Conference](https://www.ataxia.org.uk/research-news/sharing-the-success-of-the-drpla-research-conference/) - Ataxia UK has a collaborative partnership with CureDRPLA, a US-based non-profit organization that funds scientific projects to advance research for the rare ataxia Dentatorubral-pallidoluysian atrophy (DRPLA). Both Dr Julie Greenfield and Dr Silvia Prades from Ataxia UK are involved in a collaboration to advance DRPLA research and support CureDRPLA in their activities. CureDRPLA hosted an
- [AAA+ Life Hacks](https://www.ataxia.org.uk/latest-news/virtual-activities/aaa-life-hacks/) - Join us for an engaging and informative 90-minute session where we share Life Hacks which can help people living with ataxia to live your best lives! Developed by people with ataxia, the session will share a range of helpful gadgets, aids and adaptations which will help you do the things you want, need and have
- [I Have a Rare Condition](https://www.ataxia.org.uk/your-blog/i-have-a-rare-condition/) - Meet Laxmi, she lives in India and has Friedreich's ataxia (FA). In her blog post, she explains the importance of family support! I want to tell you a bit about myself. I was born like a normal child; I used to dance and do Taekwondo. But gradually, weakness started to overtake my body. I did not know
- [Ataxia Magazine 222](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-222/)
- [Holly’s Big Cycle for Pappy](https://www.ataxia.org.uk/your-blog/hollys-big-cycle-for-pappy/) - Holly (7) is Ataxia UK’s young friend, who, this summer holidays, will cycle 100 miles to support the Ataxia UK community. She did this incredible fundraiser for her Pappy, David. Here is what Lee (Holly’s dad) told us. Who is David (Pappy), and what is his diagnosis journey? David, aka Ben, is Holly’s Pappy (paternal
- [Research Impact Report 2023](https://www.ataxia.org.uk/research-news/research-impact-report-2023/) - The research that Ataxia UK funds has a real impact on the world of ataxia research, and our understanding of all ataxias. Every year we ask Ataxia UK-funded researchers to tell us about the outcomes of their research. The research Ataxia UK funds produces a range of outcomes, from raising further funding for ataxia research,
- [Gene therapy educational webinar](https://www.ataxia.org.uk/research-news/gene-therapy-educational-webinar/) - Do you want to learn about what gene therapy is, or what the future of gene therapy research may bring? Euro-ataxia, with support from Ataxia UK, will be hosting an educational webinar on gene therapy. Dr Federica Pilotto, an expert in gene therapy, will deliver a presentation and a Q&A session. This is one of
- [Complete a quick survey to encourage flexibility in New Drug Application approvals by FDA](https://www.ataxia.org.uk/latest-news/complete-a-quick-survey-to-encourage-flexibility-in-new-drug-application-approvals-by-fda/) - You may have seen that recently the United States Food and Drug Administration (FDA) issued a refuse to file letter to Biohaven regarding their New Drug Application (NDA) for troriluzole to treat Spinocerebellar Ataxia Type 3. We are helping National Ataxia Foundation (NAF) with their effort to encourage the Food and Drug Administration to apply
- [Positive results from Ataxia UK-funded speech therapy project](https://www.ataxia.org.uk/research-news/positive-results-from-ataxia-uk-funded-speech-therapy-project/) - Professor Anja Lowit (University of Strathclyde) and team have published positive results from their study of a new approach to speech therapy, called ClearSpeechTogether. In this Ataxia UK-funded project, people with ataxia had a small number of individual speech therapy sessions. This was followed by group meetings of people with ataxia to practise speaking together.
- [Understanding the cause of ARSACS](https://www.ataxia.org.uk/research-news/understanding-the-cause-of-arsacs/) - ARSACS is a rare inherited ataxia caused by mutations in a gene called the SACS gene, which is responsible for producing the sacsin protein. In people with ARSACS, the sacsin protein is not functional. However, it is not entirely known why this causes ARSACS. Researchers at Queen Mary University of London and the University of
- [Research Impact Report 2022](https://www.ataxia.org.uk/research-news/research-impact-report-2022/) - The research that Ataxia UK funds has a real impact on the world of ataxia research, and our understanding of all ataxias. Every year we ask Ataxia UK-funded researchers to tell us about the outcomes of their research. The research Ataxia UK funds produces a range of outcomes, from raising further funding for ataxia research,
- [Ataxia UK-funded project develops new TTBK2 cell models](https://www.ataxia.org.uk/research-news/ataxia-uk-funded-project-develops-new-ttbk2-cell-models/) - In their Ataxia UK-funded research project, Dr Mariana Santos Moreda Graça and her team at the Institute for Molecular and Cell Biology (IBMC, Portugal) developed new cell models to help understand TTBK2 mutations and Spinocerebellar Ataxia Type 11 (SCA11). SCA11 is a rare type of hereditary cerebellar ataxia with autosomal dominant inheritance (i.e. patients only
- [Speech therapy project shows success](https://www.ataxia.org.uk/research-news/speech-therapy-project-shows-success/) - In a project funded by Ataxia UK and the Swiss Association of Friedreich’s Ataxia (ACHAF), Professor Anja Lowit showed positive results using Lee Silverman Voice Treatment (LSVT) for ataxia.
- [Ataxia UK funds new trial investigating non-invasive brain stimulation as a potential therapy for all ataxias](https://www.ataxia.org.uk/research-news/ataxia-uk-funds-new-trial-investigating-non-invasive-brain-stimulation-as-a-potential-therapy-for-all-ataxias/) - An innovative brain stimulation technique known as 'transcranial Direct Current Stimulation' or 'tCDS' is being trialled as a potential therapy for all ataxias by an Ataxia UK funded research group in Italy.
- [Ataxia UK and FARA-funded project into heart disease associated with FA](https://www.ataxia.org.uk/research-news/ataxia-uk-and-fara-funded-project-into-heart-disease-associated-with-fa/) - Dr Carroll and his team have completed a project into a cause of heart disease associated with Friedreich’s ataxia (FA).
- [Ataxia UK funds new FA research project developing new FA animal models to test gene therapy](https://www.ataxia.org.uk/research-news/ataxia-uk-funds-new-fa-research-project-developing-new-fa-animal-models-to-test-gene-therapy/) - Ataxia UK is funding a new project led by Dr Filip Lim’s research group that builds upon their previous research into a gene therapy for Friedreich’s ataxia.
- [EFACTS reports most common 'non-ataxia' symptoms in FA](https://www.ataxia.org.uk/research-news/efacts-reports-most-common-non-ataxia-symptoms-in-fa/) - The ongoing European Friedreich's Ataxia Consortium for Translational Studies (EFACTS) study, part-funded by Ataxia UK has released a report evaluating the clinical variability in Friedreich’s ataxia (FA) symptoms.
- [Interview with PhD student and ataxia researcher Wayne Yau](https://www.ataxia.org.uk/research-news/interview-with-phd-student-and-ataxia-researcher-wayne-yau/) - We interview PhD student Wayne Yau about life as an ataxia researcher working on an Ataxia UK funded investigation on the role of genetic DNA repair mechanisms in a range of ataxias.
- [Research study aiming to improve speech in Friedreich’s ataxia looking for participants](https://www.ataxia.org.uk/research-news/urgently-seeking-fa-patients-for-clinical-trial/) - A speech therapy clinical trial aiming to begin in February are urgently seeking people with FA to take part.
- [Aug-15](https://www.ataxia.org.uk/research-news/aug-15/) - Read up on August's research news
- [November & December 2015](https://www.ataxia.org.uk/research-news/november-december-2015/) - Read up on November & December's research news
- [American Academy of Neurology 2023](https://www.ataxia.org.uk/research-news/american-academy-of-neurology-2023/) - Earlier this year, Ataxia UK awarded a travel grant to Dr David Pellerin at University College London, to attend the 2023 Annual Meeting of the American Academy of Neurology. Supporting researchers attending conferences is one of the ways Ataxia UK promotes ataxia research. Conferences offer a highly valuable opportunity to present current research, discuss with
- [Interview with Junko Shiozawa](https://www.ataxia.org.uk/research-news/drpla/interview-with-junko-shiozawa/) - https://www.youtube.com/watch?v=Qo4jUG3JA8g Dr Julie Greenfield, Ataxia UK's Head of Research, interviewed by Junko Shiozawa, who is @curedrpla's Advisory Board Member, and her daughter has DRPLA. Check out Junko's channel: @CureDiseaseKuriChannel Camera Operator & Editor: Viktor Elzer We are Ataxia UK – the leading national charity in the UK for people affected by any type of
- [The World is a Wonderful Place](https://www.ataxia.org.uk/your-blog/the-world-is-a-wonderful-place/) - Carl, in his blog post explains his ataxia journey. I didn’t realise I had ataxia, in fact, until a couple of years ago, when I started to experience some problems with my balance. Since then, I’ve seen a number of doctors and consultants and have had a string of tests at different hospitals. Until it
- [Biohaven update on Troriluzole programme](https://www.ataxia.org.uk/research-news/biohaven-update-on-troriluzole-programme/) - Biohaven is a pharmaceutical company developing Troriluzole as a treatment for SCA3. In May 2023, Biohaven submitted a New Drug Application (NDA) to the US regulators (the FDA), to apply for approval of Troriluzole to treat SCA3. Unfortunately, the FDA have decided not to review the NDA, as the primary endpoint for the study was
- [Research Outcomes Report 2019](https://www.ataxia.org.uk/research-news/research-outcomes-report-2019/) - Ataxia UK uses Researchfish to analyse the impact of Ataxia UK-funded research. This report summarises data from 39 grants, awarded between 2009 and 2018.
- [Survey seeking your advice on the treatment of sialorrhoea](https://www.ataxia.org.uk/research-news/survey-seeking-your-advice-on-the-treatment-of-sialorrhoea/) - We are gathering information from people with ataxia to help the Scottish Medicines Consortium make an informed decision about a medicine used to treat excessive drooling as a symptom of a neurological condition.
- [Triplet Therapeutics is developing a fundamentally different treatment for repeat expansion disorders such as various spinocerebellar ataxias](https://www.ataxia.org.uk/research-news/triplet-therapeutics-is-developing-a-fundamentally-different-treatment-for-repeat-expansion-disorders-such-as-various-spinocerebellar-ataxias/) - Triplet Therapeutics are developing a new treatment that aims to address the underlying cause of the genetic dysfunction responsible for repeat expansion disorders including various SCAs.
- [Research Impact Report 2020](https://www.ataxia.org.uk/research-news/research-impact-report-2020/) - Read a summary of the impact of Ataxia UK-funded research in the Research Impact Report 2020
- [Update from Novartis Gene Therapies on treatment for FA ](https://www.ataxia.org.uk/research-news/update-from-novartis-gene-therapies-on-treatment-for-fa/) - Novartis Gene Therapies have announced an update on a gene therapy that they have been developing for Friedreich’s Ataxia (FA) called OAV401. Novartis Gene Therapies develops and commercialises gene therapies for rare genetic conditions, such as FA. They have announced that the US Food and Drug Administration (FDA), which is the drug regulatory body in the US, has granted Orphan Drug Designation for OAV401. Orphan Drug Designation is
- [Biogen announce new clinical trial for SCA3 ](https://www.ataxia.org.uk/research-news/biogen-announce-new-clinical-trial-for-sca3/) - Biogen announce new clinical trial for SCA3 Biogen have announced that they are starting a Phase I clinical trial for their Spinocerebellar Ataxia Type 3 (SCA3) treatment BIIB132. A Phase I trial tests a treatment in a small group of people to look at its safety and gain information about dosage levels. To find out
- [Research project – understanding the spectrum of SCA1, SCA2, SCA3 & SCA6](https://www.ataxia.org.uk/research-news/research-project-understanding-the-spectrum-of-sca1-sca2-sca3-sca6/) - Biohaven Pharmaceuticals are working with Engage Health on this research project to learn more from families impacted by SCA types 1, 2, 3, or 6 regarding the burden and impact of these conditions on the lives of those living with them. To be eligible you must: Be a person, or spouse/parent/caregiver of a person who
- [Larimar Therapeutics receives FDA clearance to proceed with next stage of trial](https://www.ataxia.org.uk/research-news/larimar-therapeutics-receives-fda-clearance-to-proceed-with-next-stage-of-trial/) - Larimar Therapeutics is a biotechnology company developing treatments for rare conditions, including Friedreich’s ataxia (FA). They are testing a treatment for FA called CTI-1601, which is a protein replacement therapy designed to deliver the frataxin protein to the cells of people with FA. Frataxin is the protein which is decreased in people with FA. CTI-1601
- [Ataxia Magazine 221](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-221/)
- [Research Impact Report 2021](https://www.ataxia.org.uk/research-news/research-impact-report-2021/) - The research that Ataxia UK funds has a real impact on the world of ataxia research, and our understanding of all ataxias. Every year we ask Ataxia UK-funded researchers to tell us about the outcomes of their research. The research Ataxia UK funds produces a range of outcomes, from raising further funding for ataxia research,
- [Help understand the use of digital health tech](https://www.ataxia.org.uk/latest-news/help-understand-the-use-of-digital-health-tech/) - Neurological Alliance, of which Ataxia UK is a member, is working with the University Hospital Southampton to better understand the use of digital technology in neurology outpatient care. As part of this University Hospital Southampton have prepared a 30-minute survey. They would like to hear from people over the age of 18 affected by neurological
- [Angela's Story](https://www.ataxia.org.uk/your-blog/angelas-story/) - Our friend Angela has Episodic and Gluten ataxia. In her blog post, she shares her ataxia journey. DIAGNOSIS JOURNEY Hello, I am Angela Higgott, and this is my story. I have Episodic and Gluten ataxia. I was in my early thirties when my symptoms started, which were occasional but made me quite worried, so I
- [#SnowdonForAtaxia - Ben](https://www.ataxia.org.uk/your-blog/snowdonforataxia-ben/) - On the 14th of June, our friend Ben, also known as Tube Snapper, summited and descended Mount Snowdon - the highest mountain in Wales. He completed this incredible challenge in around 16 and a half hours. I used my #wheelchair, #Veloped walking machine, and my adapted walking sticks for a 16 hour climb up and
- [I will keep going - Beth](https://www.ataxia.org.uk/your-blog/i-will-keep-going-beth/) - My experience to date of having Ataxia seems like everything little additional illness takes longer to recover from. I am not sure if that’s because I am getting older or if it is because I have a chronic condition. I currently have things affecting me that I am not sure are due to menopause or
- ["Having ataxia is like living with a ticking time bomb, but when I wake up still being able to walk, I only feel gratitude." - Talluah](https://www.ataxia.org.uk/your-blog/having-ataxia-is-like-living-with-a-ticking-time-bomb-but-when-i-wake-up-still-being-able-to-walk-i-only-feel-gratitude/) - Tallulah shared her and her friend Marina's story with BBC Mundo, and she has kindly shared this with us. Here is the translated version! It all started with a funny walk. People laughed at me or asked if I—at 14—was drunk. I wasn't. In the following years I began to notice other peculiarities. My hands
- [History of Symptoms - Ian](https://www.ataxia.org.uk/your-blog/ian-holland-ataxia-history-of-symptoms/) - Meet our lovely friend, Ian. In his blog post, Ian writes about his ataxia journey. Younger days: For as long as I can remember, I’ve always been nervous about speaking publicly, even though I have been confident (sometimes over) in my own abilities, and generally, I have been above average in regard to practical tasks.
- [Ataxia UK is thrilled to announce the refunding by the National Lottery Community Fund](https://www.ataxia.org.uk/latest-news/ataxia-uk-is-thrilled-to-announce-the-refunding-by-the-national-lottery-community-fund/) - In 2019, Ataxia UK won a grant for three years of support from the Lottery Community Fund for a programme to study isolation and loneliness in the ataxia community and develop volunteering in England. In this short video Ataxia UK CEO, Sue Millman, announces the fantastic news that the National Lottery Community Fund will be
- [Lexeo Therapeutics FA trial update](https://www.ataxia.org.uk/research-news/lexeo-therapeutics-fa-trial-update/) - Lexeo Therapeutics is a company developing gene therapy for people with FA cardiomyopathy. They recently announced the completion of the first cohort in their Phase I/II trial, testing their gene therapy called LX2006. In the first cohort, LX2006 was well tolerated with no unexpected events observed. Based on this, they have begun dosing the second
- [Adore this world and find inner peace - Bayram](https://www.ataxia.org.uk/your-blog/adore-this-world-and-find-inner-peace-bayram/) - We welcome Bayram, a friend who joined us recently. In his blog post, he tells us a bit about himself. Hi, I’m Bayram. I’m 32 years old and have Spinocerebellar Ataxia (SCA). As far as I know this condition is not well known in my family. I have an older sister and she doesn’t have
- [An interview with Jane, a former carer.](https://www.ataxia.org.uk/your-blog/an-interview-with-jane-a-former-carer/) - Carers week was from the 5th to the 11th of June, and to mark the importance of this week, a member of the Ataxia UK team interviewed Jane, a former carer. 1. Can you tell us a bit about yourself My name is Jane. I am a telephone befriender and have been doing this for
- [Thank you to all our volunteers](https://www.ataxia.org.uk/your-blog/thank-you-to-all-our-volunteers/) - Volunteers Week is from 1 June until 7 June. We wanted to use this time to thank all our fantastic volunteers for all their support and incredible work. They have been actively volunteering, and we are ever so grateful that they are a part of Ataxia UK. Ataxia UK simply wouldn’t have the same impact
- [Biohaven submits NDA to FDA](https://www.ataxia.org.uk/research-news/biohaven-submits-nda-to-fda/) - Biohaven is a pharmaceutical company with an ataxia research programme. They carried out a clinical trial testing Troriluzole in a number of SCAs. Results of this 48 week trial showed that there was a treatment benefit to people with Spinocerebellar ataxia type 3 (SCA3). Following these positive results for SCA3, Biohaven announced that they have
- [Newly discovered ataxia SCA27B shows promising response to a treatment](https://www.ataxia.org.uk/research-news/newly-discovered-ataxia-sca27b-shows-promising-response-to-a-treatment/) - Late-onset spinocerebellar ataxia 27B (SCA27B) is newly discovered ataxia which is caused by a mutation in a gene called fibroblast growth factor 14 (FGF14). This discovery may lead to more diagnoses for people with ataxia of unknown cause. It is a late onset ataxia and, in some people, the condition starts with episodes of ataxia.
- [Preliminary results of Larimar Therapeutics FA trial show increase in frataxin levels](https://www.ataxia.org.uk/research-news/preliminary-results-of-larimar-therapeutics-fa-trial-show-increase-in-frataxin-levels/) - Larimar Therapeutics is a biotechnology company, developing a treatment for Friedreich’s ataxia (FA) called CTI-1601. CTI-1601 replaces frataxin, which is the protein that is reduced in FA. More specifically, CTI-1601 is a fusion protein that delivers human frataxin to cells. Their Phase 2 trial, which is taking place in the US, is designed to identify
- [You are entitled to dignity and respect - Beth](https://www.ataxia.org.uk/your-blog/you-are-entitled-to-dignity-and-respect-beth/) - Ataxia UK's Friend Beth has written another one in her series of blogs, this time focusing on the importance of being heard by medical professionals and expressing emotions. I think we can all relate to a situation where we have not been treated well. I also believe it’s important to highlight how this makes you
- [SCA-Remote study recruiting people without ataxia](https://www.ataxia.org.uk/research-news/sca-remote-study-recruiting-people-without-ataxia/) - SCA-Remote is a study which aims to understand how different spinocerebellar ataxia (SCA) symptoms develop over time. You can read more about the study here. The researchers involved in this study are also recruiting people that do not have ataxia, to act as a comparison. For more information, click here. People can take part from
- [Enjoy the ride, savour the moment & always ride on!](https://www.ataxia.org.uk/uncategorised/enjoy-the-ride-savour-the-moment-always-ride-on/) - Calum O’Neill, a 25-year-old para-cyclist with ataxia from East London, is training extremely hard for the Great Britain Cycling Team. Calum kindly agreed to share his inspiring paracycling journey... Can you tell us a little bit about yourself and your ataxia journey? When I was 18 months old, I became unwell and as part of
- [Advances in Genome Editing](https://www.ataxia.org.uk/research-news/advances-in-genome-editing/) - Genome editing has been on the news recently due to the progress being made in these scientific techniques. Genetic Alliance UK has produced an interesting paper on this topic. You can take a look at their in depth summary here.
- [Oct-15](https://www.ataxia.org.uk/research-news/oct-15/) - Read up on October's ataxia research news
- [Sep-15](https://www.ataxia.org.uk/research-news/sep-15/) - Read up on September's research news
- [Jun-15](https://www.ataxia.org.uk/research-news/jun-15/) - Read up on June's research news
- [Jul-15](https://www.ataxia.org.uk/research-news/jul-15/) - Read up on July's research news
- [Apr-15](https://www.ataxia.org.uk/research-news/apr-15/) - Read up on April's research news
- [May-15](https://www.ataxia.org.uk/research-news/may-15/) - Read up on May's research news
- [Jan-16](https://www.ataxia.org.uk/research-news/jan-16/) - Read up on January's research news
- [Feb-16](https://www.ataxia.org.uk/research-news/feb-16/) - Read up on February's latest research news
- [Mar-16](https://www.ataxia.org.uk/research-news/mar-16/) - Read up on March's latest research news
- [Latest research news - May and June 2016](https://www.ataxia.org.uk/research-news/latest-research-news-may-and-june-2016/) - Read up on the latest research news!
- [Latest Research News - July and August 2016](https://www.ataxia.org.uk/research-news/latest-research-news-july-and-august-2016/) - Read up on the latest research news!
- [European Reference Networks](https://www.ataxia.org.uk/research-news/european-reference-networks/) - the European Commission approves the first 23 European Reference Networks for rare diseases (ERNs), including the one covering the ataxias.
- [Latest Research News - September and October 2016](https://www.ataxia.org.uk/research-news/latest-research-news-september-and-october-2016/) - Read up on the latest research news!
- [Latest Research News - December 2016](https://www.ataxia.org.uk/research-news/latest-research-news-december-2016/) - Read up on the latest research news!
- [Latest Research News - January and February 2017](https://www.ataxia.org.uk/research-news/latest-research-news-january-and-february-2017/) - Read up on the latest research news!
- [Latest Research News - March and April 2017](https://www.ataxia.org.uk/research-news/latest-research-news-march-and-april-2017/) - Read up on the latest research news!
- [Research News - August and September 2017](https://www.ataxia.org.uk/research-news/research-news-august-and-september-2017/) - Catch up on the Autumn's latest research news.
- [New partnership between Ataxia UK and the Spanish organisations R+SCAs and ACAH](https://www.ataxia.org.uk/research-news/new-partnership-between-ataxia-uk-and-the-spanish-organisations-rscas-and-acah/) - Ataxia UK is working for the first time with the Spanish ataxia patient group R+SCAs (PLATAFORMA DE APOYO A LA INVESTIGACIÓN DE LAS ATAXIAS ESPINOCEREBELOSAS) in funding a research project on a range of ataxias. An existing partner ACAH (L’Associació Catalana d’Atàxies Hereditàries) is also co-funding this project. The project is led by a team
- [Dec-17](https://www.ataxia.org.uk/research-news/dec-17/) - Research news archive.
- [Research News - October and November 2017](https://www.ataxia.org.uk/research-news/research-news-october-and-november-2017/) - Catch up on the Autumn's latest research news.
- [February and March 2018](https://www.ataxia.org.uk/research-news/february-and-march-2018/) - Research news archive.
- [FDA Orphan Drug Designation for Spinocerebellar](https://www.ataxia.org.uk/research-news/fda-orphan-drug-designation-for-spinocerebellar/) - IntraBio, a U.K. based biopharmaceutical company, has received an Orphan Drug Designation from the US Food and Drug Administration (FDA) for its lead compound (IB1000) for the treatment of spinocerebellar ataxias (SCA), of which there are over 40 known subtypes. Intrabio’s Senior-Vice President Taylor Fields told Ataxia UK “Although we have only investigated the clinical
- [Research News - May and June 2018](https://www.ataxia.org.uk/research-news/research-news-may-and-june-2018/) - Catch up on the latest research news!
- [SCA drug trial to begin in America](https://www.ataxia.org.uk/research-news/sca-drug-trial-to-begin-in-america/) - Second trial investigating troriluzole in spinocerebellar ataxia announced by Biohaven pharmaceuticals to commence at the end of January.
- [Data released from preclinical study into gene therapy for Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/data-released-from-preclinical-study-into-gene-therapy-for-friedreichs-ataxia/) - The latest findings from a trial testing a potential new gene therapy for Friedreich's ataxia have been announced.
- [Study discovers 3 potential blood based biomarkers for FA](https://www.ataxia.org.uk/research-news/study-discovers-3-potential-blood-based-biomarkers-for-fa/) - Results from a study conducted at the London Ataxia Centre have shown that 3 proteins which may represent new biomarkers in Friedreich's ataxia (FA).
- [Results published from part 1 of Friedreich's ataxia drug trial](https://www.ataxia.org.uk/research-news/results-published-from-part-1-of-friedreichs-ataxia-drug-trial/) - Results from MOXIe study reveal potential therapy for Friedreich's ataxia, omaveloxolone, is well tolerated.
- [Results of a study evaluating TAK-831 in adults with Friedreich’s ataxia (FA) ](https://www.ataxia.org.uk/research-news/new-friedreichs-ataxia-trial-started-in-america/) - A new placebo-controlled trail in humans, testing a novel therapy, Tak-831 for Friedreich's ataxia, has begun in America.
- [New EU Orphan drug designation for Freidreich’s ataxia](https://www.ataxia.org.uk/research-news/new-eu-orphan-drug-designation-for-freidreichs-ataxia/) - Omaveloxolone has recently been given an Orphan drug designation for Friedreich's ataxia the European Medicines Agency.
- [Investigational therapy, EPI-743, shows promise in Phase 2 clinical trial for Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/investigational-therapy-epi-743-shows-promise-in-phase-2-clinical-trial-for-friedreichs-ataxia/) - Results from a phase 2 clinical trial suggest that a new therapy may improve neurological function and prevent disease progression relative to the natural course of Friedreich’s ataxia (FA).
- [Increasing levels of a protein in FA may be potential future therapy](https://www.ataxia.org.uk/research-news/increasing-levels-of-a-protein-in-fa-may-be-potential-future-therapy/) - Experiments performed in mice and in cells taken from Friedreich's ataxia (FA) patients reveal a protein called 'GRP75' might be an effective future treatment approach.
- [Euro-ataxia conference 2018](https://www.ataxia.org.uk/research-news/euro-ataxia-conference-2018/) - Euro-ataxia held the latest annual meeting on 9-10th November 2018 in Frankfurt, Germany, hosted by the German ataxia charity DHAG, organised by Ataxia UK and sponsored by BioMarin.
- [Final draft of National Genomic Test Directory includes hereditary ataxia](https://www.ataxia.org.uk/research-news/final-draft-of-national-genomic-test-directory-includes-hereditary-ataxia/) - NHS England has included hereditary ataxia in the final draft of the National Genomic Test Directory for rare and inherited disorders and cancer
- [HIV treatment identified as potential future therapy for FA](https://www.ataxia.org.uk/research-news/hiv-treatment-identified-as-potential-future-therapy-for-fa/) - Study finds anti-viral drug leads to decrease in frataxin levels and may be a potential future candidate for treating Friedreich's ataxia (FA).
- [Hope for gene therapy for Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/hope-for-gene-therapy-for-friedreichs-ataxia/) - This week results were published showing the effects of an AAV (adeno-associated virus) gene therapy in a new mouse model of Friedreich’s ataxia (FA).
- [New method for diagnosing ARSACS discovered at Specialist Ataxia Centre in London](https://www.ataxia.org.uk/research-news/new-method-for-diagnosing-arsacs-discovered-at-specialist-ataxia-centre-in-london/) - An imaging technique called Optical Coherence Tomography (OCT) may help with early diagnosis of Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).
- [New options for targeting gene mutation in FA described in nucleic acid therapeutics](https://www.ataxia.org.uk/research-news/new-options-for-targeting-gene-mutation-in-fa-described-in-nucleic-acid-therapeutics/) - Studies have shown that the frataxin gene may be activated by a wide variety of synthetic antisense oligonucleotides
- [Positive results announced for potential FA treatment](https://www.ataxia.org.uk/research-news/positive-results-announced-for-potential-fa-treatment/) - Pharmaceutical company, Reata, has announced new preclinical data that supports the potential use of omaveloxolone in Friedreich's ataxia.
- [Non-invasive eye exam found to predict disease severity in Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/non-invasive-eye-exam-found-to-predict-disease-severity-in-friedreichs-ataxia/) - A study has found that a rapid, non-invasive eye exam could potentially be used as a tool for assessing Friedreich's ataxia patients and as a biomarker in clinical trials.
- [Ataxia UK medical guidelines published in peer-reviewed journal](https://www.ataxia.org.uk/research-news/ataxia-uk-medical-guidelines-published-in-peer-reviewed-journal/) - We are delighted that on 20 February 2019 the Ataxia UK Medical Guidelines were published in the Orphanet Journal of Rare Diseases.
- [Friedreich’s ataxia may cause greater susceptibility to skin damage by UVA rays](https://www.ataxia.org.uk/research-news/friedreichs-ataxia-may-cause-greater-susceptibility-to-skin-damage-by-uva-rays/) - Experiments in the laboratory using skin cells taken from people with Friedreich’s ataxia have shown that these cells may be more susceptible to damage caused by certain sun rays.
- [Minoryx therapeutics announces new trial in Friedreich’s ataxia in a few European countries](https://www.ataxia.org.uk/research-news/minoryx-therapeutics-announces-new-trial-in-friedreichs-ataxia-in-a-few-european-countries/) - Ataxia UK has been talking with Minoryx Therapeutics, a company focusing on developing new drugs for rare conditions, and we are delighted with this new trial being announced.
- [Effects of physiotherapy in patients with spinocerebellar ataxia type 7](https://www.ataxia.org.uk/research-news/effects-of-physiotherapy-in-patients-with-spinocerebellar-ataxia-type-7/) - A recent study investigating the effect of investigating the effect of physiotherapy on patients with spinocerebellar ataxia type 7 (SCA7) has found that it to significantly improve symptoms.
- [Euro-ataxia annual meeting](https://www.ataxia.org.uk/research-news/euro-ataxia-annual-meeting/) - Ataxia UK's Head of Research Julie Greenfield reports on the 2018 Euro-ataxia annual conference held in Frankfurt.
- [New initiative for rare diseases launched by Finnish pharmaceutical company](https://www.ataxia.org.uk/research-news/new-initiative-for-rare-diseases-launched-by-finnish-pharmaceutical-company/) - The 'New Modalities Ecosystem’, launched in 2018 by the Finnish pharmaceutical company Orion, aims to exploit Finnish expertise to deliver new treatments and technologies for rare diseases.
- [Preliminary evidence suggests that speech treatment could improve difficulty speaking in ARSACS](https://www.ataxia.org.uk/research-news/preliminary-evidence-suggests-that-speech-treatment-could-improve-difficulty-speaking-in-arsacs/) - A recently published study has demonstrated that intensive home-based speech therapy can improve dysarthria (difficulty speaking) in autosomal recessive spastic ataxia Charlevoix-Saguenay (ARSACS).
- [Real-time audio-biofeedback (ABF) shown to improve stability in degenerative cerebellar ataxia](https://www.ataxia.org.uk/research-news/real-time-audio-biofeedback-abf-shown-to-improve-stability-in-degenerative-cerebellar-ataxia/) - A group of researchers from Germany have found that real-time audio bio-feedback improves stability in degenerative cerebellar ataxia.
- [Mutation in RFC1 gene is likely to be common cause of late-onset ataxia](https://www.ataxia.org.uk/research-news/mutation-in-rfc1-gene-is-likely-to-be-common-cause-of-late-onset-ataxia/) - A mutation in gene found to be responsible for CANVAS, a specific form of late onset ataxia, is likely to also be responsible for forms of late onset ataxia with unknown causes.
- [The eyes might be the windows to disease progression in FA](https://www.ataxia.org.uk/research-news/the-eyes-might-be-the-windows-to-disease-progression-in-fa/) - Professor Giunti and her team have identified a potential biomarker for FA by investigating the eye problems commonly found in patients.
- [uniQure releases new data from Spinocerebellar Ataxia Type 3 gene therapy study](https://www.ataxia.org.uk/research-news/uniqure-releases-new-data-from-spinocerebellar-ataxia-type-3-gene-therapy-study/) - Leading gene therapy company uniQure have announced preclinical data on its gene therapy candidate, AMT-150, for the treatment of Spinocerebellar Ataxia 3 (SCA3).
- [Global Ataxia Initiatives SCA Global and ARCA Global aim to advance ataxia research worldwide](https://www.ataxia.org.uk/research-news/global-ataxia-initiatives-sca-global-and-arca-global-aim-to-advance-ataxia-research-worldwide/) - Ataxia UK is on the steering committee of these two Global Ataxia Schemes, which hope to advance clinical research into ataxia on a worldwide scale.
- [Correcting half the faulty heart muscle cells in mouse model of FA completely reverses cardiomyopathy](https://www.ataxia.org.uk/research-news/correcting-half-the-faulty-heart-muscle-cells-in-mouse-model-of-fa-completely-reverses-cardiomyopathy/) - A recent study has demonstrated that using gene therapy to correct half of the faulty heart muscle cells in a mouse model of Friedreich's ataxia completely reverses cardiomyopathy.
- [Multiple Sclerosis drug increases levels of frataxin](https://www.ataxia.org.uk/research-news/multiple-sclerosis-drug-increases-levels-of-frataxin/) - In a recent study a team of researchers have shown that a drug used to treat Multiple Sclerosis (MS) is able to increase levels of frataxin.
- [Gene-silencing treatment approved for hereditary amyloidosis](https://www.ataxia.org.uk/research-news/gene-silencing-treatment-approved-for-hereditary-amyloidosis/) - Gene-silencing has featured in the news lately, with the approval of a new type of medicine for the treatment of a condition known as hereditary amyloidosis.
- [The Neurological Alliance Report: Neuro Patience](https://www.ataxia.org.uk/research-news/the-neurological-alliance-report-neuro-patience/) - In July 2019, The Neurological Alliance published the results of the 2018/19 National Neurology Patient Experience Survey.
- [BioMarin’s BMN 290 Programme: An Update for the Friedreich’s Ataxia Community](https://www.ataxia.org.uk/research-news/biomarins-bmn-290-programme-an-update-for-the-friedreichs-ataxia-community/) - We were disappointed to hear that on August 1, 2019 BioMarin announced plans to discontinue preclinical studies in the BMN 290 programme for Friedreich’s Ataxia.
- [Toxic protein production reduced in SCA3 and SCA1 by genetic approach](https://www.ataxia.org.uk/research-news/toxic-protein-production-reduced-in-sca3-and-sca1-by-genetic-approach/) - Spinocerebellar ataxia type 3 (SCA3) and type 1 (SCA1) are caused by mutations in the Ataxin-3 and Ataxin-1 genes that. Researchers recently tested out a type of therapy that works by targeting these genes.
- [The current state of biomarker research for Friedreich’s ataxia: a recent report from the 2018 FARA biomarker meeting](https://www.ataxia.org.uk/research-news/the-current-state-of-biomarker-research-for-friedreichs-ataxia-a-recent-report-from-the-2018-fara-biomarker-meeting/) - The US Friedreich’s ataxia charity FARA recently held a Biomarker Meeting reflecting on the current state of the development of these biomarkers.
- [Levels of the protein Nrf2 affect the development of the brain and spinal cord in Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/levels-of-the-protein-nrf2-affect-the-development-of-the-brain-and-spinal-cord-in-friedreichs-ataxia/) - A recent study has shown that reduced Nrf2 levels in embryos taken from mice with FA affects the development of the brain and spinal cord.
- [Minoryx Therapeutics completes enrollment in FRAMES phase 2 trial with leriglitazone in Friedreich’s Ataxia](https://www.ataxia.org.uk/research-news/minoryx-therapeutics-completes-enrollment-in-frames-phase-2-trial-with-leriglitazone-in-friedreichs-ataxia/) - Recruitment of 39 patients in multicenter European phase 2 trial completed ahead of schedule
- [Very exciting results from Friedreich's ataxia (FA) study](https://www.ataxia.org.uk/research-news/very-exciting-results-from-friedreichs-ataxia-fa-study/) - Reata Pharmaceuticals Inc have announced some brilliant news following a study into Friedreich's ataxia treatment.
- [Minoryx Therapeutics granted FDA Orphan Drug Designation in Friedreich’s Ataxia for new drug leriglitazone](https://www.ataxia.org.uk/research-news/minoryx-therapeutics-granted-fda-orphan-drug-designation-in-friedreichs-ataxia-for-new-drug-leriglitazone/) - Minoryx Therapeutics has announced that its lead drug candidate, leriglitazone (MIN-102), has been given an Orphan Drug Designation for Friedreich’s Ataxia by the US Food and Drug Administration (FDA).
- [Depressive symptoms predict quality of life in FA patients and deserve recognition](https://www.ataxia.org.uk/research-news/depressive-symptoms-predict-quality-of-life-in-fa-patients-and-deserve-recognition/) - A recent study has demonstrated depression has a significant impact on the quality of life of patients with Friedreich’s ataxia.
- [Cadent Therapeutics aims to begin new trial in SCAs by the end of 2019](https://www.ataxia.org.uk/research-news/cadent-therapeutics-aims-to-begin-new-trial-in-scas-by-the-end-of-2019/) - Earlier this year the FDA granted an Orphan Drug Designation to an investigational treatment developed by Cadent Therapeutics for spinocerebellar ataxia. They plan to begin a clinical trial by the end of 2019.
- [Euro-ataxia publishes patient charter outlining mission for patient involvement in ataxia clinical trials](https://www.ataxia.org.uk/research-news/euro-ataxia-publishes-patient-charter-outlining-mission-for-patient-involvement-in-ataxia-clinical-trials/) - At the Euro-ataxia meeting in Frankfurt on 9th November 2018 a workshop was held to discuss the role of patients and patient groups in research. This led to the creation of the Euro-ataxia patient charter which has now been published.
- [Friedreich’s ataxia research project identifies new drug targets](https://www.ataxia.org.uk/research-news/friedreichs-ataxia-research-project-identifies-new-drug-targets/) - An Ataxia UK funded project using an innovative gene editing approach has identified 23 potential drug targets.
- [Chondrial Therapeutics Announces Dosing of First Patients in Phase 1 FA trial](https://www.ataxia.org.uk/research-news/chondrial-therapeutics-announces-dosing-of-first-patients-in-phase-1-fa-trial/) - Chondrial Therapeutics recently announced that the first person has been treated in a Phase 1 clinical trial to assess the safety and tolerability of CTI-1601.
- [uniQure publishes data from spinocerebellar ataxia type 3 gene therapy study](https://www.ataxia.org.uk/research-news/uniqure-publishes-data-from-spinocerebellar-ataxia-type-3-gene-therapy-study/) - Leading gene therapy uniQure have published data on their gene therapy candidate AMT-150.
- [Exicure to launch gene therapy programme in Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/exicure-to-launch-gene-therapy-programme-in-friedreichs-ataxia/) - Exicure have announced Friedreich’s ataxia (FA) as the therapeutic indication for the company’s first neurology development programme for their gene therapy technology.
- [New clinical trial testing HIV treatment, Etravirine, as potential therapy for FA to begin this year in Italy](https://www.ataxia.org.uk/research-news/new-clinical-trial-testing-hiv-treatment-etravirine-as-potential-therapy-for-fa-to-begin-this-year-in-italy/) - A research group in Italy will soon be launching a clinical trial in an effort to repurpose anti-viral drug Etravirine for use in FA.
- [Exenatide in FA research](https://www.ataxia.org.uk/research-news/exenatide-in-fa-research/) - Research shows exenatide increases frataxin in cell models and platelets in people with FA.
- [Genetic approach to treat many spinocerebellar ataxias](https://www.ataxia.org.uk/research-news/genetic-approach-to-treat-many-spinocerebellar-ataxias/) - Dr Marta Olejniczak and her colleagues have used a genetic tool to silence the expression of mutated genes containing expanded CAG repeats in patient-derived cell lines of various ataxias.
- [Arginine shows promise in a number of different ataxias](https://www.ataxia.org.uk/research-news/arginine-shows-promise-in-a-number-of-different-ataxias/) - Researchers in Japan have shown that a compound called Arginine is able to prevent harmful protein clumps from forming in cell models of polyglutamine disorders.
- [Disappointing news from Reata and FDA regarding Omaveloxolone](https://www.ataxia.org.uk/research-news/disappointing-news-from-reata-and-fda-regarding-omaveloxolone/) - An update about Reata Pharmaceuticals Omaveloxolone trial in FA
- [Diagnosing and treating primary autoimmune cerebellar ataxia (PACA)](https://www.ataxia.org.uk/research-news/diagnosing-and-treating-primary-autoimmune-cerebellar-ataxia-paca/) - Professor Hadjivassiliou at the Sheffield Ataxia Centre, and his colleagues have been investigating a type of ataxia, known as 'PACA', that could be responsible for a number of idiopathic ataxia cases.
- [Measuring the faulty protein in SCA3](https://www.ataxia.org.uk/research-news/measuring-the-faulty-protein-in-sca3/) - A novel test that can measure the faulty protein levels in people with Spinocerebellar Ataxia 3 (SCA3)
- [Neurofilament light tracks SCA3 progression](https://www.ataxia.org.uk/research-news/neurofilament-light-tracks-sca3-progression/) - Spinocerebellar ataxia type 3 (SCA3), also known as Machado-Joseph disease, is caused by a genetic mutation in the ATXN3 gene. SCA3 is thought to be the most common SCA worldwide, and currently there is no effective treatment for the condition. Biomarkers are characteristics that can be measured, evaluated and used to indicate disease progression or
- [Omaveloxolone (Omav) Update](https://www.ataxia.org.uk/research-news/omaveloxolone-omav-update/) - In October 2019, Reata Pharmaceuticals announced positive top-line results from their MOXIe trial testing Omaveloxolone (or Omav) in Friedreich’s ataxia (FA). In the MOXIe trial, Reata used the modified Friedreich’s Ataxia Rating Scale (mFARS) to measure the symptoms of those taking Omav vs those taking placebo (a placebo is a substance that has no therapeutic
- [FA drug clinical trial update: Larimar Therapeutics ](https://www.ataxia.org.uk/research-news/larimar-therapeutics/) - Recently, Ataxia UK had a meeting with representatives from Larimar Therapeutics, a clinical-stage biotechnology company focused on developing treatments for complex rare diseases, to discuss possible collaborations to help progress research on a potential treatment for Friedreich's ataxia (FA). In December, Larimar announced the completion of dosing from its Phase 1 single ascending dose (SAD)
- [Open letter to Reata and the FDA](https://www.ataxia.org.uk/research-news/letter-reata-and-fda/) - FARA's campaign asks people affected by Friedreich's ataxia to sign their open letter. The letter addresses the US regulator, FDA, and Reata pharmaceuticals. The letter requests Reata to submit a new drug application. It also asks the FDA to consider the approval of a new drug application for Omaveloxolone based on current evidence. Omaveloxolone is
- [UK Rare Disease Framework launched to improve diagnosis and treatment of rare diseases](https://www.ataxia.org.uk/research-news/uk-rare-disease-framework-launched-to-improve-diagnosis-and-treatment-of-rare-diseases/) - A new government strategy to improve the lives of people living with rare diseases, across the 4 nations of the United Kingdom, has now been launched. The UK Rare Disease Framework, following on from the previous Rare Disease Strategy, has been designed around the views and experiences of those living with rare diseases. The rare-disease community helped to identify 4 key priority areas to bring
- [The Voice of the Patient: Living with Polyglutamine Spinocerebellar Ataxias and Dentatorubral-Pallidoluysian Atrophy](https://www.ataxia.org.uk/research-news/the-voice-of-the-patient-living-with-polyglutamine-spinocerebellar-ataxias-and-dentatorubral-pallidoluysian-atrophy/) - On September 25, 2020 the National Ataxia Foundation (NAF) and CureDRPLA organised the Externally-Led Patient Focus Drug Development (EL-PFDD) meeting. You can watch the recording here. The EL-PFDD meeting provided a unique opportunity for the United States’ Food and Drug Administration (FDA) to hear directly from patients, their families, caregivers, and patient advocacy organisations. This meeting focused on polyglutamine spinocerebellar ataxias
- [Neuromodulation of the cerebellum rescues movement in a mouse model of ataxia](https://www.ataxia.org.uk/research-news/neuromodulation-of-the-cerebellum-rescues-movement-in-a-mouse-model-of-ataxia/) - The International Neuromodulation Society defines therapeutic neuromodulation as “the alteration of nerve activity through targeted delivery of a stimulus, such as electrical stimulation or chemical agents, to specific neurological sites in the body.” An example of neuromodulation therapy is deep brain stimulation (DBS). DBS is a neurosurgical technique, that requires the implantation of electrodes into specific areas in the
- [New Ataxia Consortium created to accelerate the development of treatments for the Ataxias](https://www.ataxia.org.uk/research-news/cpta/) - Ataxia UK, along with Ataxia Global Initiative and National Ataxia Foundation, recently partnered with Critical Path Institute (C-Path) for the launch of their Critical Path to Therapeutics for the Ataxias (CPTA) Consortium. CPTA is a public-private partnership focused on accelerating the development of treatments for inherited Ataxias. The work of the Consortium will focus on
- [New paper published on lower urinary tract and bowel dysfunction in spinocerebellar ataxias](https://www.ataxia.org.uk/research-news/new-paper-published-on-lower-urinary-tract-and-bowel-dysfunction-in-spinocerebellar-ataxias/) - A new paper from the team at the London Ataxia Centre provides new information on symptoms of the lower urinary tract (LUT) and the bowel in people with spinocerebellar ataxias (SCAs). The lower urinary tract consists of the bladder and the urethra (the tube carrying urine from the bladder to outside the body). The objective of this research was to evaluate the prevalence of LUT
- [Reata Pharmaceuticals – Omaveloxolone Update](https://www.ataxia.org.uk/research-news/reata-pharmaceuticals-omaveloxolone-update/) - Update 17/11/2022 Omav data presented at the International Congress for Ataxia Research (ICAR 2022 – Dallas, Texas) Dr David Lynch, from the University of Pennsylvania and Children’s Hospital of Philadelphia, is one of the investigators who has been working with Reata Pharmaceuticals for many years to study omaveloxolone (Omav) as a potential treatment for Friedreich’s
- [Larimar Therapeutics: FA Drug Update](https://www.ataxia.org.uk/research-news/larimar-therapeutics-fa-drug-update/) - Update 27/09/2022 In May 2021, the US Food and Drug Administration (FDA) put a full clinical hold on Larimar Therapeutics programme for Friedreich’s ataxia (FA) drug CTI-1601. CTI-1601 is a treatment which delivers frataxin protein to cells of people with FA. Frataxin is the protein which is reduced in FA. The hold meant that Larimar
- [Development and Validation of a Patient-Reported Questionnaire of Ataxia Progression](https://www.ataxia.org.uk/research-news/development-and-validation-of-a-patient-reported-questionnaire-of-ataxia-progression/) - In the clinic, assessment of cerebellar ataxias has been largely confined to clinical rating scales (e.g. Scale for Assessment and Rating of Ataxia -SARA-), gait laboratories, imaging of the brain, and collection of biosamples. However, all these measures do not take into consideration the patients’ experience of the condition or its change over time. Patient
- [New research suggests a reason for a delayed age of onset in some people with Friedreich’s ataxia: Full interview with researcher Dr Suran Nethisinghe](https://www.ataxia.org.uk/research-news/new-research-suggests-a-reason-for-a-delayed-age-of-onset-in-some-people-with-friedreichs-ataxia-full-interview-with-researcher-dr-suran-nethisinghe/) - The Ataxia Magazine Issue 215 reported on a new paper on Friedreich’s ataxia (FA) from the team led by Professor Paola Giunti at the London Ataxia Centre, which has been recently published: https://www.mdpi.com/1422-0067/22/14/7507. Genes are made of a chain of components, identified by a letter (A, T, C or G). In FA, the FXN gene
- [Ataxia UK Annual Conference: Gluten-free diet tips for gluten ataxia patients](https://www.ataxia.org.uk/research-news/ataxia-uk-annual-conference-gluten-free-diet-tips-for-gluten-ataxia-patients/) - At the 2021 Ataxia UK Annual Conference, there was an interesting session from Professor Marios Hadjivassiliou and Emma Foster on immune and gluten ataxias. During the Q and A session, Emma Foster, who is a Senior Ataxia Nurse Specialist, covered gluten-free diet tips for patients with gluten ataxia. Please find them below. Question 1. How difficult is it to maintain a
- [A simple DNA test can detect common neurological disorders](https://www.ataxia.org.uk/research-news/research-shows-simple-dna-test-can-detect-common-neurological-disorders-including-some-ataxias/) - An article published in the Lancet Neurology showed that whole genome sequencing (WGS) can detect common inherited neurological disorders, including some ataxias. Genetic testing can be a slow process, with a number of tests sometimes required to provide a diagnosis. However, this study showed that WGS (a different type of genetic testing) can quickly and
- [Update on Novartis Gene Therapies Friedreich’s ataxia Program](https://www.ataxia.org.uk/research-news/update-on-novartis-gene-therapies-friedreichs-ataxia-program/) - Please see below an update from Novartis Gene Therapies on their Friedreich's ataxia program: February 2022 Novartis Gene Therapies had been developing a therapeutic approach for Friedreich’s ataxia. One candidate, OAV401, is an investigational AAV9-based gene therapy. The journey to bring new therapies from the lab to patients is complex and our team works with
- [Paper published on the attitudes of people with ataxia towards clinical trials](https://www.ataxia.org.uk/research-news/paper-published-on-the-attitudes-of-people-with-ataxia-towards-clinical-trials/) - In January 2022, researchers at UCL/UCLH, Children’s Hospital of Philadelphia, Ataxia UK and Friedreich’s Ataxia Research Alliance (FARA), published a paper on the attitudes of people with ataxia towards clinical trials. The team wanted to understand the motivations and barriers around clinical trial participation. This information is important when designing clinical trials to improve recruitment,
- [LEXEO Therapeutics announce plans for clinical trial](https://www.ataxia.org.uk/research-news/lexeo-therapeutics-announce-plans-for-clinical-trial/) - LEXEO Therapeutics is a gene therapy company, developing treatments for a number of conditions including cardiomyopathy associated with FA. In February 2022, LEXEO Therapeutics announced that the FDA had cleared an Investigational New Drug application for their gene therapy product LX2006. This is a requirement before clinical trials can take place. LEXEO are planning to
- [Identification of SCA3 biomarkers - an interview with Dr Hector Garcia-Moreno](https://www.ataxia.org.uk/research-news/identification-of-sca3-biomarkers-an-interview-with-dr-hector-garcia-moreno/) - Dr Hector Garcia-Moreno is a Neurologist and Clinical Research Fellow working at the London Ataxia Centre, in the team led by Professor Paola Giunti. Dr Garcia-Moreno is involved in the ESMI project (European Spinocerebellar ataxia type 3/Machado-Joseph disease Initiative), which is a SCA3 research initiative involving researchers from five countries. In the UK, the ESMI
- [New genetic cause of late-onset ataxia discovered](https://www.ataxia.org.uk/research-news/new-genetic-cause-of-late-onset-ataxia-discovered/) - Many people with ataxia do not have a specific genetic diagnosis and the cause of their ataxia is unknown. Two papers have been published which have identified a genetic mutation that might be a common cause of late-onset ataxia (ataxia where the start of symptoms occurs relatively later in life). This type of ataxia has
- [PROSPAX and TREAT-ARCA project updates](https://www.ataxia.org.uk/research-news/prospax-and-treat-arca-project-updates/) - PROSPAX (PROgression chart of SPAstic ataXias) and TREAT-ARCA are two global projects, aimed at advancing research into specific ataxias (ARSACS and SPG7 for PROSPAX, and ARSACS and COQ8A-ataxia for TREAT-ARCA). The PROSPAX team would like to thank everyone who completed their two surveys on the symptoms experienced by people with ataxia and/or hereditary spastic paraplegia
- [Gait measurements as a potential biomarker for SCA3](https://www.ataxia.org.uk/research-news/gait-measurements-as-a-potential-biomarker-for-sca3/) - Researchers from The German Centre for Neurodegenerative Diseases (DZNE) in Tübingen, and the ESMI Consortium, have published a study looking at the potential for gait measurements to quantify progression of SCA3 over time. When planning an ataxia clinical trial, it is extremely important that researchers have a reliable way to measure the progression of ataxia
- [Drug combination shows positive effect in models of FA](https://www.ataxia.org.uk/research-news/drug-combination-shows-positive-effect-in-models-of-fa/) - A study led by researchers at the London Ataxia Centre, in collaboration with UC Davis California and Brunel University London, has shown that a combination of resveratrol and a multiple sclerosis treatment called dimethyl fumarate had positive effects in cell and animal models of Friedreich’s ataxia. Frataxin is a protein that is found in the
- [Top Ten UK research priorities for interventions in childhood neurological conditions](https://www.ataxia.org.uk/research-news/childhood-neurological-conditions-priority-setting-partnership/) - Last year, we publicised two surveys from the British Paediatric Neurology Association (BPNA) and the James Lind Alliance (JLA). The aim of these surveys was to identify research priorities for people living with childhood neurological conditions, and their families and carers. The results of these surveys have now been published. The BPNA and JLA asked
- [Agreement creates the largest worldwide database for Friedreich's ataxia](https://www.ataxia.org.uk/research-news/agreement-creates-the-largest-worldwide-database-for-friedreichs-ataxia/) - The EFACTS registry (European Friedreich's Ataxia Consortium for Translational Studies) collects clinical information from people with Friedreich’s ataxia (FA) across Europe, including at the London Ataxia Centre. Ataxia UK provided some initial funding to EFACTS, and our Scientific Advisor Prof Barry Hunt is on the Steering Committee as a patient representative. The Critical Path Institute
- [Making research happen](https://www.ataxia.org.uk/research-news/making-research-happen/) - The Association of Medical Research Charities (AMRC), of which Ataxia UK is a member, created an animation describing the fundamental role that charities play in research in the UK. Charities are vital partners in UK research, because they respond to the needs of people living with the condition they support, tackle areas of unmet need,
- [Measuring physical activity in trials](https://www.ataxia.org.uk/research-news/measuring-physical-activity-in-trials/) - Rare neurological conditions, such as ataxia, often cause problems with balance and coordination, which can limit physical activity. Interventions aimed at improving levels of physical activity are often recommended, for example strength training and balance training. However, when trials are done to test whether these interventions are effective, they are often small trials that fail
- [Design Therapeutics announce positive data from Friedreich’s ataxia trial](https://www.ataxia.org.uk/research-news/design-therapeutics-announce-positive-data-from-friedreichs-ataxia-trial/) - Design Therapeutics have announced positive data from the first part of their Phase I clinical trial of DT-216. They found that treatment with DT-216 increased frataxin mRNA. Frataxin mRNA is decreased in people with Friedreich’s ataxia (FA) and leads to the symptoms of the condition. The safety data also showed that the drug was well-tolerated.
- [Did you take part in the 100,000 Genomes Project?  ](https://www.ataxia.org.uk/research-news/did-you-take-part-in-the-100000-genomes-project/) - The 100,000 Genomes Project, launched in 2013, aimed to sequence 100,000 genomes from people with rare conditions, such as ataxia, or cancer. Sequencing the whole genome of people with rare conditions can help to identify genes that cause conditions such as ataxia. Since 2013, the 100,000 Genomes Project has contributed to ground-breaking discoveries and continues
- [Wearable technology for Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/wearable-technology-for-friedreichs-ataxia/) - Exciting research from two ground-breaking studies shows the power of wearable technology and artificial intelligence in monitoring movement disorders, including Friedreich’s ataxia (FA) Researchers have used a wearable tool to gather vast amounts of information on movement, and how movement is affected in FA. By combining human movement data with artificial intelligence technology, they hope
- [Exploratory study - ARSACS exercise programme](https://www.ataxia.org.uk/research-news/exploratory-study-arsacs-exercise-programme/) - Researchers in Canada have been studying a rehabilitation programme for a type of ataxia called ARSACS. The aim of their study was to see whether a rehabilitation programme could improve balance and walking abilities. In the small exploratory study, a group of people with ARSACS had three exercise sessions per week for 8 weeks (two sessions
- [Optimal clinical pathway for people in England with rare neurological conditions](https://www.ataxia.org.uk/research-news/optimal-clinical-pathway-for-people-in-england-with-rare-neurological-conditions/) - The optimal clinical pathway sets out what good treatment, care and support looks like for people with neurological conditions, from those experiencing the first symptoms, to those that have lived with such conditions for a long time. When Ataxia UK was notified that a pathway was to be created for people with movement disorders, we
- [Larimar Therapeutics - FA trial update](https://www.ataxia.org.uk/research-news/larimar-therapeutics-fa-trial-update/) - Larimar Therapeutics is a biotechnology company, developing a treatment for Friedreich's ataxia (FA) called CTI-1601. CTI-1601 replaces frataxin, which is the protein that is reduced in FA. Larimar Therapeutics recently announced that the first cohort for their Phase 2 trial has enrolled all participants, and is proceeding as planned. This 4 week trial is designed
- [8.8 million euros for accelerated drug repurposing for rare neurological disorders](https://www.ataxia.org.uk/research-news/8-8-million-euros-for-accelerated-drug-repurposing-for-rare-neurological-disorders/) - SIMPATHIC Consortium receives grant from European Commission The SIMPATHIC Consortium, led by the Dutch Radboud University Medical Center and Amsterdam University Medical Centers, has developed a new approach to expedite the use of existing drugs for groups of patients with rare neurological disorders. The consortium has been awarded an 8.8 million euros grant from the
- [Biogen announce they have stopped SCA3 clinical trial](https://www.ataxia.org.uk/research-news/biogen-announce-they-have-stopped-sca3-clinical-trial/) - Ataxia UK were saddened to hear that Biogen have stopped their Phase I clinical trial for SCA3 therapeutic BIIB132 (MERA study). The trial was planned to be an international study, including a small number of people with SCA3 in the UK (read the original study announcement here). The decision to stop the trial was made
- [Ben Spencer Visits all of London's Tube Stations!](https://www.ataxia.org.uk/uncategorised/ben-spencer-visits-all-of-londons-tube-stations/) - A friend of Ataxia UK has spent months visiting all of London's Tube stations to make the most of his mobility while raising awareness of his condition. Ben, aka TubeSnapper, has progressive cerebellar ataxia and lives in Buckhurst Hill, Essex. He is a former bouncer but is taking a year out of his career to
- [Mobility & Medications - Martyn Hurt](https://www.ataxia.org.uk/your-blog/mobility-medications-martyn-hurt/) - You may know Martyn from his previous blogs. In this blog post, Martyn discusses his mobility and medication journey. After getting a diagnosis I was prescribed Acetazolamide and Topiramate. I was also referred to a MRI scan (all my MRIs have been clear). Over the years, I have been on a number of different medications but have had
- [DRPLA Natural History and Biomarkers Study – an interview with Dr Hector Garcia-Moreno and Ola Volhin](https://www.ataxia.org.uk/research-news/drpla-natural-history-and-biomarkers-study-an-interview-with-dr-hector-garcia-moreno-and-ola-volhin/) - DRPLA Research Manager, Dr Silvia Prades, interviews Dr Hector Garcia-Moreno and Ola Volhin about the DRPLA Natural History and Biomarkers Study. Ataxia UK and CureDRPLA are coordinating this study and the funding is provided by CureDRPLA. This is a global study with study sites in London, New York and North Carolina, all of which are
- [DRPLA Patient Registry](https://www.ataxia.org.uk/research-news/drpla-patient-registry/) - Ataxia UK and the US Foundation CureDRPLA are the lead organisations of the CureDRPLA Global Patient Registry. This Registry aims to collect data on as many Dentatorubral-pallidoluysian atrophy (DRPLA) patients as possible. The Registry collects patient-reported data on individuals affected with DRPLA once a year to understand how the condition changes over time. Having a
- [Targeting the genetic cause of DRPLA](https://www.ataxia.org.uk/research-news/targeting-the-genetic-cause-of-drpla/) - A project targeting the genetic cause of DRPLA, a rare form of ataxia, has received further funding from Ataxia UK.
- [Here's my opinion! - Georg Herdt](https://www.ataxia.org.uk/your-blog/18213/) - I’ve been living with the knowledge of having FA for almost eight years now. One might think I got used to this life and I should know what I am doing, but it’s rather the opposite. I mourn for my old life, the condition took so much from me: my career, my marriage, it changed
- [Ataxia Magazine 220](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-220/)
- [Here is my story! - Duygu Akdeniz](https://www.ataxia.org.uk/your-blog/here-is-my-story-duygu-akdeniz/) - I'm Duygu Akdeniz from Izmir, Turkey. I'm 30 years old. I worked as a librarian at the Ministry of National Education until October 2021. I have Friedreich’s Ataxia. The diagnosis was made in 2004. Sadly, this condition is not well known in my country. My iron deficiency required me to have iron infusions four times
- [Occupational Therapy and You](https://www.ataxia.org.uk/your-blog/ot-and-you/) - We are Karishma and Lara, MSc. Occupational Therapy students from the University of Brighton on placement at Ataxia UK. Join us as we introduce the role of Occupational Therapy and offer some tools to help with fatigue management. These activities will include gentle stretching, breathing and mindfulness techniques including breathwork and
- [An Open Letter Regarding A Closed Matter](https://www.ataxia.org.uk/your-blog/an-open-letter-regarding-a-closed-matter/) - #AtaxiaUK is joining The Neurological Alliance and 44 other organisations from across England. We are urging the Secretary of State for Health and Care, Stephen Barclay to #BackThe1in6 and include neurological conditions in the proposed Major Conditions Strategy. Neurological Alliance, a coalition of more than 90 organisations dedicated to improving the lives of people with
- [London Fashion Week in Wheels – a blog by Ataxia UK's Friend – Dee](https://www.ataxia.org.uk/your-blog/fashion-week-in-wheels-dee/) - There I was. A wheelchair-using woman about to enter the Kurt Geiger showroom, about to model for a new disability-inclusive brand for their first runway show called Unhidden in the centre of London. Sounds like a dream, right? Except it wasn’t. This was real life with me at the centre. I still couldn’t comprehend even
- [My wobbly adventure – Singapore & Thailand! Blog by Ataxia UK's Friend – Tallulah](https://www.ataxia.org.uk/your-blog/my-wobbly-adventure-singapore-thailand/) - Travelling is something I've always loved to do. I've been fortunate enough to have had the opportunity from a young age to immerse myself into many different cultures, try delicious local food from a number of different countries and pick up the odd phrase or two in languages very different to my own. Exploring a
- [Successful meet up in Cardiff with DRPLA families](https://www.ataxia.org.uk/research-news/successful-meet-up-in-cardiff-with-drpla-families/) - Article written by Dr Silvia Prades - DRPLA Research Manager On February 22nd, I organised a meet up for families affected by DRPLA who are based in Wales. I travelled to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at University College London on the DRPLA Natural History and Biomarkers Study. We met
- [A note from Ataxia UK regarding AmazonSmile](https://www.ataxia.org.uk/latest-news/a-note-from-ataxia-uk-regarding-amazonsmile/) - Like every small charity, where every penny really does make a huge impact, we are just as disappointed as you to be finding out today that Amazon will be ending its AmazonSmile programme. AmazonSmile launched 10 years ago and through every purchase you make it donates a small amount to your chosen charity. Since the
- [James Loach, the young man who touched the hearts of many](https://www.ataxia.org.uk/your-blog/17681/) - The Ataxia UK staff interviewed Yvette Loach and Vanessa Bartlett, the mother and Aunty of James Loach. James, a loving young man who passed away 10 years ago at the age of 19, has left a lasting legacy that his family is striving to uphold. During the past decade, the Loach family has supported Ataxia
- [Student Life: Tallulah's Story](https://www.ataxia.org.uk/your-blog/student-life-tallulahs-story/) - Tallulah is 19 and has Ataxia with Oculomotor Apraxia Type 2 (AOA2), one of the rarest forms of ataxia. It took a full decade to receive a diagnosis, and she's already fundraising for ataxia research.
- [My Tournament Journey Part one ](https://www.ataxia.org.uk/your-blog/my-tournament-journey-part-1/) - Helen McKnight takes her ataxia to a karate tournament! I began my karate journey with preparation and nutrition. I eat nutritious foods. To build up my muscles, I need to eat healthy and balanced meals. Ostrich fillet is an excellent option because it is much stronger than steak and very high in protein. My
- [There is still a good life out there - a story by Ataxia UK's Friend Hannah](https://www.ataxia.org.uk/your-blog/there-is-still-a-good-life-out-there/) - Phoebe is 12 years old and has Friedreich’s Ataxia, she is a part-time wheelchair user. She lives in Devon with her younger sister. She is fun and outgoing with a wicked sense of humour. Phoebe loves weightlifting and disabled strength sports and goes to the gym 2-3 times a week. She shows great strength and
- [Frustration With Voice Changes – a story by Ataxia UK's Friend Beth](https://www.ataxia.org.uk/your-blog/frustration-with-voice-changes/) - Beth writes about her challenging experience with her bank's voice recognition software. My bank uses voice recognition as a security measure because they say your voice is unique. I have tried twice, but my voice is not recognised. As an Ataxia warrior, I am finding the pitch and clarity of my voice constantly changing hard.
- [We have it and we have to live with it – a story by Ataxia UK's Friend Christine](https://www.ataxia.org.uk/your-blog/we-have-it-and-we-have-to-live-with-it/) - Hey everyone! You may remember me from my previous blog. I'm back and would love to tell you more about myself! I am blessed to have two wonderful children and three adorable grandchildren who are very dear to me. Throughout my life, I have always enjoyed crafting and participating in fairs. Up until 2015, my
- [Book Fundraiser](https://www.ataxia.org.uk/virtual-fundraising/book-fundraiser/) - Storybooks where anything is possible: The Jono Papaya Book Series Looking for some new story books for your kids? One of our amazing supporters has just launched the fantastic 'Jono Papaya' book series. Discover a storybook series for your children that shows them they can do anything they put their mind to! Jono Papaya is
- [The Difference Between Preference and Fear ](https://www.ataxia.org.uk/uncategorised/the-difference-between-preference-and-fear/) - Beth Winder shares her thoughts on the 'difference between preference and fear' in this eye-opening piece! Being an Ataxia warrior means that you constantly have to keep moving forward. The question is: do you prefer not to do something, or are you afraid to do it? I found that I was doing things because other
- [FREE course to improve understanding of health research processes](https://www.ataxia.org.uk/latest-news/free-elearning-course-to-improve-understanding-of-health-research-processes/) - New FREE eLearning course aims to improve understanding of health research processes The European Federation of Neurological Associations (EFNA) has launched a new eLearning course on the theme of research, with modules on ‘Patient and Public Involvement in research’, ‘Overcoming the barriers to clinical trials access’ and ‘Data generation: Surveys to support policy and advocacy’.
- [Enjoy life and take on everyday challenges!](https://www.ataxia.org.uk/uncategorised/enjoy-life-and-take-on-everyday-challenges/) - Hi, I'm Junaid. I'm a qualified personal trainer and have a degree in information technology. It has not been easy for me to reach where I am today. Although I faced many challenges, I was able to overcome them with the support of my family and friends. In spite of my young age, I am
- [Millie Mae in conversation with Dan Beacon](https://www.ataxia.org.uk/latest-news/millie-mae-in-conversation-with-dan-beacon/) - Watch this video of Millie Mae in conversation with Dan Beacon, discussing her life with Friedreich's ataxia, her plans for the future and catching up on her journey since we last sat down in 2016. Watch the video below:
- [Ataxia Magazine 219](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-219/)
- [The UK's first Ataxia Centre for Children!](https://www.ataxia.org.uk/ataxia-uk-news/the-uks-first-ataxia-centre-for-children/) - Thanks to your generous giving to the Big Give last year, we are ecstatic to announce the first Ataxia Specialist Centre for children.
- [Reflections from ICAR by Ataxia UK Trustee Carol](https://www.ataxia.org.uk/your-blog/reflections-from-icar-by-ataxia-uk-trustee-carol/) - This year saw the International Congress for Ataxia Research (ICAR) held in Dallas, Texas, from 1st – 4th November 2022. The outcome of the research presentations will be reported by the research team from Ataxia UK, but I just wanted to share some reflections, from a personal perspective, as someone living with Ataxia. I was
- [Bill Treacher - In Memory](https://www.ataxia.org.uk/in-memory/bill-treacher/)
- [Andrew Bailey](https://www.ataxia.org.uk/in-memory/andrew-bailey/)
- [Tubesnapper](https://www.ataxia.org.uk/your-blog/tubesnapper/) - Hi, I’m Ben, I’m 49, and I live in Buckhurst Hill, Essex. However, I’m originally from South London, which is why I support Millwall FC. I have progressive cerebellar ataxia, although this may be further diagnosed next year. I have an 8-month wait to see the team at the specialist ataxia centre in London, as
- [Evelyn Irvin](https://www.ataxia.org.uk/in-memory/evelyn-irvin/)
- [Roger Westacott](https://www.ataxia.org.uk/in-memory/roger-westacott/)
- [Barbara Binner](https://www.ataxia.org.uk/in-memory/barbara-binner/)
- [Tony Niland](https://www.ataxia.org.uk/in-memory/tony-niland/)
- [Evelyn Irvin](https://www.ataxia.org.uk/in-memory/evelyn-irvin-2/)
- [William Fullbrook](https://www.ataxia.org.uk/in-memory/william-fullbrook/)
- [Barry Smeaton](https://www.ataxia.org.uk/in-memory/barry-smeaton/)
- [Darren Winfield-Stanesby](https://www.ataxia.org.uk/in-memory/darren-winfield-stanesby/)
- [Natasha Graffen](https://www.ataxia.org.uk/in-memory/natasha-graffen/)
- [William Derek Main](https://www.ataxia.org.uk/in-memory/william-derek-main/)
- [Jeanette Fryat](https://www.ataxia.org.uk/in-memory/jeanette-fryat/)
- [International Congress for Ataxia Research 2022](https://www.ataxia.org.uk/research-news/international-congress-for-ataxia-research-2022/) - Between November 1st - 4th 2022, Ataxia UK, the National Ataxia Foundation (NAF), and the Friedreich’s Ataxia Research Alliance (FARA) co-hosted the International Congress for Ataxia Research (ICAR). This conference was held in Dallas, Texas, USA and combined the best of the organisations’ popular scientific research meetings. The conference was a hugely successful event. About
- [Thriving with Friedreich’s](https://www.ataxia.org.uk/your-blog/thriving-with-friedreichs/) - Will Street has been a Friend and an amazing supporter of Ataxia UK for years. Some of you may know him through his company WillStreetTWF. We also wanted to extend a massive thank you to him and all the fantastic support and fundraising he’s provided through the sales of his electric wheelchair attachments. But, without
- [Covid-19 vaccine: Autumn 2022 Booster](https://www.ataxia.org.uk/covid-19/covid-19-vaccine-autumn-2022-booster/) - Everyone aged 5 (on or before 31 August 2022) and over can get a 1st and 2nd dose of the COVID-19 vaccine. There are also two booster doses of the COVID-19 vaccine you may be able to get: a 1st booster for everyone aged 16 and over, and some people aged 12 to 15 who
- [The DRPLA Natural History and Biomarkers Study is now recruiting participants](https://www.ataxia.org.uk/research-news/the-drpla-natural-history-and-biomarkers-study-is-now-recruiting-participants/) - Ataxia UK and CureDRPLA are coordinating the DRPLA Natural History and Biomarker Study for this very rare form of ataxia. The funding for the study is provided by CureDRPLA. This is a global study, including a UK site at the London Ataxia Centre, which is now recruiting participants. The DRPLA Natural History and Biomarkers Study
- [Live your best life](https://www.ataxia.org.uk/your-blog/live-your-best-life/) - Hi, I'm Canberk from Turkey. Actually, from Hatay, the southern city of Turkey. I was born in 1996. My childhood was quite good, we were always travelling and going on holidays with my family. It didn't feel like anything was wrong with me. When I turned 14 things started changing. I did feel little tremors
- [Ataxia Magazine 218](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-218/)
- [Rugby in my life](https://www.ataxia.org.uk/your-blog/rugby-in-my-life/) - Hi Ataxia UK family and friends! This blog is about my Rugby journey and how ataxia affected my playing abilities. My name is Glyn Bennett, I was born in 1960 to a family from a small mining village in South Yorkshire, more than five miles outside of Rotherham. I developed a passion for rugby at
- [Give the gift of speech: Mark Deere](https://www.ataxia.org.uk/your-blog/mark-deere/) - Mark Deere has SCA28 and his speech problems have resulted in him having to stop working. Here he tells us why speech therapy is so important for those living with ataxia. In 1990 I left the UK to work in hotels, primarily in Dubai. In 2019 I was diagnosed with SCA28 and moved home to Wales. I’m now 56 years
- [Give the gift of speech: Peter Kahn ](https://www.ataxia.org.uk/your-blog/peter-kahn/) - Peter Kahn has cerebellar ataxia and tells us how the speech therapy group with Anja Lowit has changed his life. I was diagnosed with cerebellar ataxia around seven years ago and I’m 70 years old now. I am retired but used to work as a gardener. My diagnosis was relatively easy and straightforward. I noticed that I had been falling over and my speech was slurring
- [Give the gift of speech: Heather Deville](https://www.ataxia.org.uk/your-blog/heather-deville/) - Heather Deville has Friedreich’s ataxia (FA) and talks about how speech therapy has given her the confidence to speak in company. I was diagnosed with FA at 49 years old and am now 57. Prior to my FA diagnosis I had had testing for other types of ataxia and was given a vague diagnosis of cerebellar ataxia. The diagnosis process was not great because I didn’t show any symptoms of ataxia until I
- [Will you #BackThe1in6?](https://www.ataxia.org.uk/your-blog/will-you-backthe1in6/) - We’re supporting The Neurological Alliance’s #BackThe1in6 campaign, urging governments throughout the UK to establish a Neuro Taskforce to improve services for people with neurological conditions. Join us and sign the petition. As a member of The Neurological Alliance, Ataxia UK supports their mission to ensure that public policy in health reflects the realities of living with
- [The Atlantic crossing: Fun & Diverse](https://www.ataxia.org.uk/your-blog/the-atlantic-crossing-fun-diverse/) - I would like to welcome you back to The Atlantic Crossing series. In this blog I will tell you all about the diverse environment and how much fun we had!. The crew were strange, not like people I know and our differences made it hard to become proper friends with most of them but I
- [Win Your Daily Battles](https://www.ataxia.org.uk/your-blog/win-your-daily-battles/) - Meet Richard, the Co-Chair of Ataxia UK, who will in his blog tell you a bit about himself. Hey Ataxia UK family and friends, some of you know me already but I would like to introduce myself to those who do not! I am Richard, in my mid-40s and live in Oxfordshire with my wife
- [Helpful resources](https://www.ataxia.org.uk/covid-19/helpful-resources/) - Mental health and wellbeing Talking to children about illness NHS Living Life is a free and confidential telephone counselling service based on a Cognitive Behavioural Therapy approach. The service is available to anyone over the age of 16 suffering low mood, mild to moderate depression and/or anxiety. The service can be accessed by referral from a
- [Ataxia Magazine 216](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-216/)
- [Jim at his new Gym!](https://www.ataxia.org.uk/your-blog/jim-at-his-new-gym/) - Hi everyone! It’s David here, Jim’s gym buddy, you might know us from my previous blog. In this blog I will tell you how Jim’s motivation encouraged him to turn his garage into a gym and he continued to train every single day. Jim really wanted to retain his independence and relying on others
- [2022 CureDRPLA Research Conference](https://www.ataxia.org.uk/research-news/2022-curedrpla-research-conference/) - On May 11th, CureDRPLA hosted the first-ever conference on Dentatorubral-pallidoluysian atrophy (DRPLA) research, in Boston (USA). Ataxia UK has a collaborative relationship with CureDRPLA and we are working together to advance DRPLA research. Drs. Silvia Prades and Julie Greenfield from our Research Department attended this conference. We had a wide range of attendees with different
- [Eligibility for Covid-19 treatments](https://www.ataxia.org.uk/covid-19/eligibility-for-covid-19-treatments/) - Updated: June 6, 2022 Coronavirus Treatments The COVID-19 vaccines continue to remain the best way to defend against a coronavirus infection. However, for some people with certain health conditions there remains the risk of becoming seriously unwell with a coronavirus infection. In addition to the vaccines, the NHS are now offering new monoclonal antibody and
- [Meet the Graves, founders of Micro Acres Wales](https://www.ataxia.org.uk/latest-news/meet-the-graves-founders-of-micro-acres-wales/) - Donna and Chris are a couple from Wales who run a family business called Micro Acres Wales. A recent diagnosis of ataxia prompted Chris to change his lifestyle in order to improve his health. They ended up creating their own 'urban and vertical farm', which provided natural goods for the entire neighbourhood! Chris and Donna
- [Ataxia Magazine 217](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-217/)
- [My Thoughts? And What's Next.](https://www.ataxia.org.uk/your-blog/my-thoughts-and-whats-next/) - Ed writes about his thoughts and journey after being diagnosed It's worrying. Finding out you have this genetic disease which does not have a cure and there's very little known about it. Suddenly a lot of plans for the future (financial, relationships, careers) are thrown into the air. It's been almost a year since my
- [The Atlantic crossing: Cape Verde Onwards](https://www.ataxia.org.uk/your-blog/the-atlantic-crossing-cape-verde-onwards/) - Lali started a blog series with 'Finding my ship'. In this blog, she will continue to tell you about her journey of exploration of the Atlantic Ocean. From Cape Verde, it took three weeks until we reached Antigua and during that time the crew got to know each other pretty well. There were thirty voyage
- [Ed's Diagnosis Journey](https://www.ataxia.org.uk/your-blog/eds-diagnosis-journey/) - Ed, one of Ataxia UK's media ambassadors, talks about his diagnosis journey. Hi, My name's Ed and I have hereditary cerebellar ataxia - specifically, SYNE1-related spinocerebellar ataxia (ARCA8). Symptoms have slowly crept up on me during my 20s and I recently received a diagnosis (shortly after turning 30 in 2021). How did it start? During
- [Greetings from Gaziantep!](https://www.ataxia.org.uk/your-blog/greetings-from-gaziantep/) - Ali, a supporter from Turkey, writes about his diagnosis journey and experience with Ataxia UK. Hi everyone! I’m Ali Demirsoy, 24, I live in Gaziantep, Turkey. Generally, I’m at home – working on research projects or revising for my exams. Currently, I don’t attend school but I do have exams coming up. My social life
- [Annual Conference 2022 - Update](https://www.ataxia.org.uk/ataxia-uk-news/annual-conference-2022-update/) - Throughout the charity sector and beyond, it is being found following two years of the pandemic people are reluctant to commit themselves to events very far in advance with many planned events being cancelled. This is Ataxia UK’s experience too! Despite a number of people expressing interest in coming to the Scottish Conference on 18th
- [Martyn’s Diagnosis Journey](https://www.ataxia.org.uk/your-blog/martyns-diagnosis-journey/) - Martyn Hurt here – you may remember me from my previous blogs! Before being diagnosed, I had never heard of ataxia at all, never mind different types. I knew my dad had dizzy spells, but not much more than that. I didn't see him from the age of 2 until 14, and then infrequently
- [Covid-19 Booster update ](https://www.ataxia.org.uk/covid-19/covid-19-booster-update/) - There are currently 3 types of boosters for the Covid-19 vaccine: A 1st booster dose of the COVID-19 vaccine: Everyone aged 16 and over who had their 2nd dose vaccine at least 3 months ago is eligible, as well as some children aged 12 to 15. A booster dose (4th dose) of the COVID-19 vaccine:
- [Jim’s story from David’s pen!](https://www.ataxia.org.uk/your-blog/jims-story-from-davids-pen/) - David talks about his gym buddy Jim, 73, who has spinocerebellar ataxia type 6. Jim was diagnosed with ataxia 4 years ago. Jim and I have been sports buddies for over 30 years. Endurance runs have always been our passion, and he has shared his passion by coaching others with his in-depth knowledge of the
- [All About Ataxia: Neil Casey](https://www.ataxia.org.uk/your-blog/all-about-ataxia-neil-case/) - Neil Casey was relieved to find out ataxia is the condition that had been troubling him for a long time, then he became a volunteer for Ataxia UK. I'm Neil, one of the facilitators for All About Ataxia (AAA). I was diagnosed with ataxia in December 2017. At last, I had been given a diagnosis,
- [Giving Back: Jay Patel](https://www.ataxia.org.uk/your-blog/giving-back-jay-patel/) - Jay Patel is an All About Ataxia facilitator and shares his experiences of living with ataxia. I have SCA28. Most of my motor functions are affected to some degree. The main symptoms for me are my slurred speech, I choke more easily when eating/drinking, I am unbalanced when I walk, I can get fatigue, I
- [Rare Disease Day Quiz](https://www.ataxia.org.uk/your-blog/rare-disease-day-quiz/) - In aid of this year's Rare Disease Day, Anastasia will be hosting a virtual quiz with some 'rare' themed questions! So join us on Zoom on Monday 28 February from 1-2pm. Register for free at this link: https://bit.ly/32Dwlao What is Rare Disease Day? Rare Disease Day is the globally-coordinated movement on rare diseases, working towards
- [All About Ataxia: Gemma Sheen](https://www.ataxia.org.uk/your-blog/all-about-ataxia-gemma-sheen/) - As Gemma continues her search for her exact ataxia type, she volunteers at our All About Ataxia sessions. I have a form of spinocerebellar ataxia but I am still undergoing genetic testing to determine the exact genetic type. The main issues for me are pain, fatigue and difficulty with walking. I use a walking stick
- [Me and my ataxia](https://www.ataxia.org.uk/your-blog/me-and-my-ataxia/) - Peter Wormington writes about his experience with ataxia so far. I first realised something was wrong when I found the floor rather too sloping after a couple of pints on an empty stomach. That was in 2007 or so, and I was 55. Over the next few years I found myself less able to ski;
- [Diagnosis shouldn’t mean you give up hope](https://www.ataxia.org.uk/your-blog/diagnosis-shouldnt-mean-you-give-up-hope/) - Despite Olie’s diagnosis being a difficult time, he writes about how he changed his perspective. Six years ago at 21 years old, I was about to begin an exciting career in the Police Force. However, while completing the medical test, the doctor noticed issues with my balance and senses. In order to investigate this, I
- [Finding My Ship](https://www.ataxia.org.uk/your-blog/finding-my-ship/) - Hi. I’m Lali and I have ataxia. In this blog I will tell you about my adventurous journey of the Atlantic crossing. I flew out to the Canary Islands really not knowing what to expect. I remember seeing this enormous tall ship with huge, shining wooden masts and white, pristine sails. I was so excited;
- [The effects of karate](https://www.ataxia.org.uk/your-blog/the-effects-of-karate/) - Helen McKnight has done karate on and off since she was 14 years old – here she tells us why. After many misdiagnoses and doctors appointments I was finally diagnosed with spinocerebellar ataxia type 35 (SCA35). I had never heard of ataxia and neither had any of my family or friends - I was the first one in my family to
- [Dee's story](https://www.ataxia.org.uk/your-blog/dees-story/) - Hey ataxia fam and friends, I’m Dee! And I have Friedreich's ataxia (This is not an AA meeting) I’m so used to people asking ‘Huh? What is that?’ It has become a reflex since my diagnosis five years ago at 19. My response is simply ‘I have a genetic mutation; I am a mutant. I
- [The Helpline is open!](https://www.ataxia.org.uk/latest-news/helpline-hours/) - If you would like to find out more, or talk to a member of the team, please get in touch via the Helpline, by calling 0800 995 6037 or by emailing help@ataxia.org.uk. The Helpline is open Monday to Thursday 10.30am until 2.30pm.
- [Chair Pilates - 25 January 2022](https://www.ataxia.org.uk/your-blog/chair-pilates-25-january-2022/) - Join us on Tuesday 25 January at 11:30am-12.30pm for an hour of Chair Pilates, led by Sonia Forde who has over 17 years’ experience as a Pilates teacher. Read more about Sonia’s work here. About the class A seated movement class using Pilates techniques which will focus on mobilising and stretching the whole body. It
- [Virtual Annual Conference](https://www.ataxia.org.uk/latest-news/virtual-conference-2021/) - Ataxia Unlocked Don't worry if you missed this year's conference as we recorded some of the brilliant sessions which you can watch below. Paul Coia interviews... Research Correction: The details on Slide 13 of the presentation should be switched between Blade Therapeutics and Q-State Biosciences. Blade Therapeutics pre-clinical studies are on compound
- [Covid-19 vaccine: Boosters](https://www.ataxia.org.uk/covid-19/covid-19-vaccine-boosters/) - Following the successful rollout of the Covid-19 vaccine, some people who are at higher risk of serious illness from Covid-19 are now being offered a booster vaccine dose. This booster dose of the vaccine is being offered to those that are eligible 6 months after their second dose. Our Medical Advisory Panel strongly advise people with ataxia to have the booster vaccine
- [A bit about me](https://www.ataxia.org.uk/your-blog/a-bit-about-me/) - Hello! My name is Martyn Hurt and I'm 50 years old. I have type 2 episodic ataxia (EA2.) I was born in Nottingham but we moved away when I was 13. Finally ending up in Rochdale (1984) where I met my wife, Julie, who lived over the road and went to the same school. We
- [Forever Yours: Jane's Story](https://www.ataxia.org.uk/your-blog/forever-yours-janes-story/) - Alan Maxwell tells us about his late wife, Jane, and her achievement in putting together her autobiography on living with ataxia, 'Forever Yours.'
- [The Big Give Christmas Challenge 2018!](https://www.ataxia.org.uk/ataxia-uk-news/the-big-give-christmas-challenge-2018/) - Double your Christmas gift to Ataxia UK without giving an extra penny!
- [Wellbeing Week  21-25 June](https://www.ataxia.org.uk/ataxia-uk-news/wellbeing-week/) - InControl are delighted to announce the launch of our first annual wellbeing week. We are offering a range of virtual workshops designed to increase your emotional wellbeing as the lockdown lifts in the UK. All our free workshops are running on Zoom from 1pm-2pm, and everyone is welcome to attend. Monday 21 June: Speech Therapy
- [The Big Give - you did it!](https://www.ataxia.org.uk/ataxia-uk-news/the-big-give-you-did-it/) - Find out what this year's money will be going towards...
- ['I'm fine, thanks' by Chris Doveton](https://www.ataxia.org.uk/your-blog/im-fine-thanks-by-chris-doveton/) - Chris cared for his wife, Anne, who had Friedreich's ataxia. Since her passing, Chris has written a book to share his experiences.
- [Lockdown life with ataxia: part one](https://www.ataxia.org.uk/your-blog/lockdown-life-with-ataxia-part-one/) - Ataxia UK's Co-Chair Richard Brown tells us about his life in lockdown.
- [Implications of coronavirus (covid-19) for people with ataxia](https://www.ataxia.org.uk/ataxia-uk-news/implications-of-coronavirus-covid-19-for-people-with-ataxia/) - How Covid-19 can affect someone with ataxia and ways to keep yourself safe during this pandemic.
- [Double your donation, double your impact!](https://www.ataxia.org.uk/ataxia-uk-news/double-your-donation-double-your-impact/) - Donate here to double your donations to Ataxia UK at no extra cost to you!
- [Disordered not Drunk: Beryl's story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-beryls-story/) - After doing a good deed and looking out for her neighbour, Beryl was left feeling deflated and upset.
- [Results presented from patient communications survey](https://www.ataxia.org.uk/research-news/results-presented-from-patient-communications-survey/) - The results of the patient communications survey conducted at the 2018 Ataxia UK conference were presented in London by Ataxia UK partners Costello Medical.
- [Glut 1 deficiency syndrome trial announces negative results](https://www.ataxia.org.uk/research-news/glut-1-deficiency-syndrome-trial-announces-negative-results/) - A potential therapy for Glucose transporter 1 deficiency syndrome (Glut1 DS) has produced negative results in phase 3 of its clinical trial.
- [Research News - October 2018](https://www.ataxia.org.uk/research-news/research-news-october-2018/) - International Ataxia Research Conference (IARC) 2019 - Save the date! Ataxia UK, GoFAR, FARA US and FARA Australia are pleased to announce the next International Ataxia Research Conference to be held on 14-16 November in Washington, DC. This will be the 3rd International Ataxia Research Conference where the latest research in Friedreich's Ataxia, SCAs and
- [Save the date for International Ataxia Research Conference 2019!](https://www.ataxia.org.uk/ataxia-uk-news/save-the-date-for-international-ataxia-research-conference-2019/) - Ataxia UK, GoFAR, FARA US and FARA Australia are pleased to announce the next International Ataxia Research Conference to be held on 14-16 November in Washington, DC. This will be the 3rd International Ataxia Research Conference where the latest research in Friedreich's Ataxia, SCAs and other progressive ataxias will be presented and discussed. More information
- [Interview with PhD student and ataxia researcher Wayne Yau](https://www.ataxia.org.uk/research-news/interview-with-phd-student-and-ataxia-researcher-wayne-yau-2/) - Interview with PhD student and ataxia researcher Wayne Yau Ataxia UK is funding a project alongside the Spanish organisations R+SCAs (Plataforma de Apoyo a la Investigación de las Ataxias Espinocerebelosas) and ACAH (L’Associació Catalana d’Atàxies Hereditàries), investigating the involvement of DNA repair mechanisms in the modulation of age onset in a range of ataxias. The
- [World Orphan Drug Congress 2018 – Washington DC](https://www.ataxia.org.uk/research-news/world-orphan-drug-congress-2018-washington-dc/) - Ataxia UK was represented by research officer Dr Julie Vallortigara at the World Orphan Drug Congress in Washington DC. She shares her experience about this event.
- [New leaflet series launched: funding ataxia research projects](https://www.ataxia.org.uk/ataxia-uk-news/new-leaflet-series-launched-funding-ataxia-research-projects/) - Helping you fundraise for specific research projects by disseminating information easily to potential donors. Support research you want to get behind.
- [Mark Dower Trust Applications Deadline](https://www.ataxia.org.uk/ataxia-uk-news/mark-dower-trust-applications-deadline/) - Applications to The Mark Dower Trust, a grant that aims to increase the independence of 16-30's with ataxia, close on Wednesday 31 January.
- [Kidz Aware: training opportunities in Yorkshire](https://www.ataxia.org.uk/ataxia-uk-news/kidz-aware-training-opportunities-in-yorkshire/) - Kidz Aware are offering training courses, based in Wakefield, Yorkshire, for parents/carers and service providers, to help improve the issues young disabled people face this February and March.
- [Phil and the Exeter campaign](https://www.ataxia.org.uk/your-blog/phil-and-the-exeter-campaign/) - The Exeter Campaign: Phil has episodic ataxia, which can attack at any time without warning. The unpredictability of his condition has limited what he's able to do for work as well as pleasure.
- [Bex and the Exeter campaign](https://www.ataxia.org.uk/your-blog/bex-and-the-exeter-campaign/) - The Exeter Campaign: Meet Bex, the face of the Exeter campaign. Bex has long been involved with the Ataxia UK support network, starting her own Branch of the charity in Exeter eleven years ago.
- [Beka and the Exeter campaign](https://www.ataxia.org.uk/your-blog/beka-and-the-exeter-campaign/) - The Exeter Campaign: Beka is 15 years old, and has Friedreich's ataxia. She was once an award-winning horse rider, but can no longer ride. This is her story.
- ['Your Blogs'](https://www.ataxia.org.uk/your-blog/text-for-your-blog-page/) - Hi Adam, Thanks for your help with this! I would like to feature the following content in a 'read more' expandable block beneath the existing text on this listing page: https://www.ataxia.org.uk/Blogs/our-friends-blog/Category/members-blog Many thanks indeed! All the best, Steph
- [The Big Give Christmas Challenge!](https://www.ataxia.org.uk/ataxia-uk-news/the-big-give-christmas-challenge/) - This year, we took part in the Big Give Christmas Challenge, raising over a phenomenal £42,000 thanks to your generosity!
- [Calling all bloggers, vloggers and writers!](https://www.ataxia.org.uk/ataxia-uk-news/calling-all-bloggers-vloggers-and-writers/) - Ataxia UK are looking for bloggers, vloggers and writers to produce content for our new platform, 'Your Blog.' Raise awareness of ataxia by writing for us.
- [Coming to terms with it: Frances's story](https://www.ataxia.org.uk/your-blog/coming-to-terms-with-it-francess-story/) - Frances was diagnosed with spino-cerebellar ataxia type 3 (SCA3) in 2009 at 49. Her symptoms were worsening, but she didn’t want to believe anything was wrong. Frances tells us about acceptance, the changes she has had to make for her career and how she manages her symptoms.
- [Update from Brexit Health Alliance: Priorities for EU withdrawal negotiations](https://www.ataxia.org.uk/ataxia-uk-news/update-from-brexit-health-alliance-priorities-for-eu-withdrawal-negotiations/) - Update from Brexit Health Alliance: Priorities for EU withdrawal negotiations
- [Medical Guidelines webinar with Findacure](https://www.ataxia.org.uk/ataxia-uk-news/medical-guidelines-webinar-with-findacure/) - Listen to our Research Officer discussing Ataxia UK's updated 3rd edition of Ataxia UK's Medical Guidelines with FIndacure.
- [Strategic Plan 2017-2020: 'Taking Control'](https://www.ataxia.org.uk/ataxia-uk-news/strategic-plan-2017-2020-taking-control/) - Ataxia UK unveil their new Strategic Plan for 2017-2020.
- [Removing Barriers by Toyah Wordsworth](https://www.ataxia.org.uk/your-blog/removing-barriers-by-toyah-wordsworth-2/) - Toyah Wordsworth discusses how volunteering and employment gave her the confidence to create her own business, and a board game to help younger people become further educated about disability.
- [Top European Award for Ataxia Specialist](https://www.ataxia.org.uk/ataxia-uk-news/top-european-award-for-ataxia-specialist/) - We are delighted to share with you the news that Dr Paola Giunti, from the London Ataxia Clinic, has won the Health Professional Award at the European Federation of Neurological Associations' annual advocacy award ceremony. Upon receiving the award, Dr Giunti said: “It strengthens my determination to continue researching ataxia and developing the service, which
- [Ataxia UK Annual Conference - Presentation Slides](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-uk-annual-conference-presentation-slides/) - We at Ataxia UK were delighted to host our annual conference on 7th & 8th October. Thank you to all who came and a special thanks to those who volunteered, as well as the speakers on the day. Presentations were given on; Ataxia UK Update - Sue Millman Need Help to Communicate? No Voice -
- [Latest Research News - April 2016](https://www.ataxia.org.uk/research-news/latest-research-news-april-2016/) - Read up on the latest research news!
- [Community & political involvement](https://www.ataxia.org.uk/your-blog/martyn-hurt/) - Greetings, I’m Martyn, I have type 2 episodic (EA2). I’d like to talk a bit about my political and community involvement experiences. I have been involved in community work since I was 16 and, along with my wife and some friends, we ran a small Residents Association and charity from 2006-2013 which involved things like
- [Give as you Shop](https://www.ataxia.org.uk/ataxia-uk-news/give-as-you-shop/) - Read how to donate to Ataxia UK for free and from your sofa on our new Give to Shop page.
- [Ataxia Magazine 215](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-215/)
- [Ataxia Magazine 214](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-214/)
- [Mark Dower Trust: deadline 31 January](https://www.ataxia.org.uk/ataxia-uk-news/mark-dower-trust-deadline-31-january/) - Applications closing soon for young people's financial support. Increase your independence through further studies, employment, specialist equipment or hobbies/ skills.
- [In memory of Jaina](https://www.ataxia.org.uk/your-blog/jaina/) - Jaina's cousin, Shivani, contacted Ataxia UK to share the blog posts written by Jaina before she sadly passed away. Jaina was diagnosed with Friedreich's ataxia at 13 years old. In her blogs, she wrote about her life with ataxia and how ataxia affected her. Jaina's hope with her blogs was to inspire others who are
- [Help shape our strategy for the next three years](https://www.ataxia.org.uk/ataxia-uk-news/help-shape-our-strategy/) - At Ataxia UK we are starting the process of deciding its priorities and developing its plan for the next three years. If we’re going to do that properly, we need an up to date understanding of what’s happening in the lives of our Friends and their families, what you think of our services and other
- [Transitions (change)](https://www.ataxia.org.uk/your-blog/transitions/) - Beth writes about her attitudes towards others’ perception of disability, and how it affects her life. It is exceedingly difficult to take on others uncomfortableness with your disability. It takes time to understand ataxia and find a way to keep going. You must not let the thoughts of how others see you, affect you. When
- [Ataxia Magazine 213](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-213/)
- [Chair Pilates - 27 July 2021](https://www.ataxia.org.uk/your-blog/chair-pilates-27-july-2021/) - Join us on Tuesday 27 July at 11:30am-12.30pm for an hour of Chair Pilates, led by Sonia Forde who has over 17 years’ experience as a Pilates teacher. Read more about Sonia’s work here. About the class A seated movement class using Pilates techniques which will focus on mobilising and stretching the whole body. It
- [Chair Pilates - 29 June 2021](https://www.ataxia.org.uk/your-blog/chair-pilates-29-june-2021/) - Join us on Tuesday 29 June at 11:30am-12.30pm for an hour of Chair Pilates, led by Sonia Forde who has over 17 years’ experience as a Pilates teacher. Read more about Sonia’s work here. About the class A seated movement class using Pilates techniques which will focus on mobilising and stretching the whole body. It
- [Travelling with ataxia, to be continued…](https://www.ataxia.org.uk/your-blog/lali-travel/) - Lali writes about her travelling experience with ataxia, including accessible finds in Nice that helped her to travel comfortably. The best thing for me when travelling is to have good friends who will always help and wait for me. Even better if they are strong, so usually that will be a boy! (Sorry to my
- [Volunteers' Week: Mari Akhurst](https://www.ataxia.org.uk/your-blog/mariakhurst/) - Mari is a Media Ambassador and helps to respond to messages and comments across our social media channels. Here's her experience so far. What volunteering role do you do at Ataxia UK? Media Ambassador. How long have you been volunteering with Ataxia UK? Over 6 months. What made you become a volunteer? I wanted to
- [Volunteer's Week: Rizwan Aziz](https://www.ataxia.org.uk/uncategorised/volunteers-week-rizwan-aziz/) - We spoke to Rizwan Aziz about his experience of volunteering... What volunteering role(s) do you do at Ataxia UK? I am a befriender for the Friends Connect service. How long have you been volunteering with Ataxia UK? I signed up as a volunteer around 8 months ago, and then waited a while to be
- [Minds in Movement: Ataxia UK's Online Exhibition Fundraiser](https://www.ataxia.org.uk/fundraisers/minds-in-movement-ataxia-uks-online-exhibition-fundraiser/) - Ataxia UK is excited to announce our first online exhibition fundraiser, 'Minds in Movement’ from 4 to 31 August 2021. The title and theme of the exhibition - movement – were chosen to shed light on ataxia, a group of neurological conditions. The ataxias affect the cerebellum: the part of the brain that controls movement and sends signals
- [Volunteers' Week: Mark Deere](https://www.ataxia.org.uk/your-blog/markdeere/) - We talked to Mark about his volunteering experience with Ataxia UK... What volunteering role(s) do you do at Ataxia UK? I assist James and Anastasia in the InControl team with administration. How long have you been volunteering with Ataxia UK? I started assisting in March 2020 (at the time of the first lockdown!) What made you become a volunteer?
- [Volunteers' Week: Emma Buckett](https://www.ataxia.org.uk/your-blog/emmabuckett/) - One of our brilliant volunteers, Emma, writes about her experience with Ataxia UK. My name is Emma and I am 41 years old. I have Friedriech’s ataxia and was diagnosed at a very young age. I currently volunteer as a Friends Connect Befriender with Ataxia UK. I have been a member of Ataxia UK since the ‘80’s, but I
- [Work for us: Fundraising Administration Intern vacancy](https://www.ataxia.org.uk/ataxia-uk-news/work-for-us-fundraising-administration-intern-vacancy/) - Join the team for a six-month contract, gaining your entry to the Charity Sector and, in particular, Fundraising.
- [Advice](https://www.ataxia.org.uk/16-30/advice/) - We interviewed members of the 16-30's group about topics such as relationships, living independently and exercise with ataxia.
- [Motherhood](https://www.ataxia.org.uk/your-blog/motherhood/) - Media Ambassdor, Lali Cardozo, talks about being a mother with ataxia to Calypso. Calypso is my daughter; she was seven pounds and two ounces when she was born at 11.45pm on 17 October. She was a petite, average sized baby and there was nothing wrong with her. She was perfect; not too big, not too small. She had thick, black ringlets covering her head and a nose just
- [Chair Pilates - June 2021](https://www.ataxia.org.uk/uncategorised/chair-pilates-june-2021/) - Join us on Tuesday 8 June at 11:30am-12.30pm for an hour of Chair Pilates, led by Sonia Forde who has over 17 years’ experience as a Pilates teacher. Read more about Sonia’s work here. * Please note the date of this event has changed from 1 June. The correct date is now 8 June. About
- [Change your address with Ataxia UK](https://www.ataxia.org.uk/ataxia-uk-news/change-your-address-with-ataxia-uk/) - If you are a Friend of Ataxia UK or receive communications from us, please let us know when you move address so we can continue sending to you. It's really easy to do this, just email help@ataxia.org.uk with your new address and we will update our records. Thank you!
- [Why The Cornberg Grant Matters...](https://www.ataxia.org.uk/ataxia-uk-news/why-the-cornberg-grant-matters/) - A note to say thank you, from the Schofield family
- [Webinars and Q&A with ataxia specialists](https://www.ataxia.org.uk/covid-19/webinars-and-qa-with-ataxia-specialists/) - Q&A with Prof Paola Giunti and Suzanne Booth - 10 March 2021 'Coping with Covid' with Prof Paola Giunti and Suzanne Booth - 16/17 October 2020 Click here to view the PowerPoint slides Q&A with Prof Paola Giunti and Suzanne Booth - 29 July 2020 Click here to view the PowerPoint slides
- [Ataxia in disguise](https://www.ataxia.org.uk/your-blog/ataxia-in-disguise/) - Carol talks about her seven-year journey to an ataxia diagnosis, but the cause still remains a mystery. It started for me in the summer of 2014. We moved house and the first signs of ataxia appeared which I put down to tiredness and stress. In my madness, we also took on a rescue dog, a
- [Chair Pilates - April 2021](https://www.ataxia.org.uk/uncategorised/chair-pilates-april-2021/) - Join us on Tuesday 27 April at 11:30am-12.30pm for an hour of Chair Pilates, led by Sonia Forde who has over 17 years’ experience as a Pilates teacher. Read more about Sonia’s work here. About the class A seated movement class using Pilates techniques which will focus on mobilising and stretching the whole body. It
- [Chair Pilates](https://www.ataxia.org.uk/uncategorised/chair-pilates/) - Join us on Tuesday 23 March at 11:30am-12.30pm for an hour of Chair Pilates, led by Sonia Forde who has over 17 years’ experience as a Pilates teacher. Read more about Sonia’s work here. About the class A seated movement class using Pilates techniques which will focus on mobilising and stretching the whole body. It
- [Covid-19 vaccine priority groups](https://www.ataxia.org.uk/covid-19/covid-19-vaccine-priority-groups/) - Ataxia UK has recently been made aware that some people with ataxia are not being ‘flagged up’ on their GP’s systems as being in the appropriate priority group for the Covid-19 vaccine. Our Medical Advisory Panel strongly advise people with ataxia to have the vaccine when it is offered to them. Priority Group 4 should include the following: Over 70 years of age with ataxia Ataxia with
- [Covid-19 vaccine update](https://www.ataxia.org.uk/latest-news/covid-19-vaccine-update/) - With the availability of the vaccines in the UK, Ataxia UK has had a number of enquiries from people with ataxia about it. We, therefore, discussed this with our Medical Advisory Panel who said they would strongly advise people with ataxia to have the vaccine, when it is offered to them. Prof Giunti and Suzanne
- [Ataxia doesn't stop my love for music](https://www.ataxia.org.uk/your-blog/ataxia-doesnt-stop-my-love-for-music/) - In part two of Adrian's blog, he talks about his love of music and, despite the challenges of ataxia, his commitment to making music. I have loved music from a young age. I remember how even a song on the radio in the kitchen would captivate me as a child, I would almost zone out
- [Covid-19 vaccine and gene therapy](https://www.ataxia.org.uk/covid-19/covid-19-vaccine-and-gene-therapy/) - Vaccines currently approved in the UK At present, there are three Covid-19 vaccines approved for use in the UK: Pfizer/BioNTech Oxford/AstraZeneca Moderna How do these vaccines work? Messenger RNA (mRNA) vaccines: Both the Pfizer/BioNTech and Moderna vaccines are mRNA vaccines. These vaccines give our body the instructions to make the ‘spike protein’, which is a harmless piece found on the surface of
- [Rare Disease Day: The curse of the Invisible Illness](https://www.ataxia.org.uk/your-blog/curse-of-invisible-illness/) - Ataxia is a big part of Tallulah Clark's life - here she talks about the challenges around rare diseases. I've been staring at my screen aimlessly for the last half an hour, because truthfully today I don't just want to write about my ataxia. Today is a fairly ok average day in my world and
- [Rare Disease Day: Dale’s story](https://www.ataxia.org.uk/your-blog/dales-story/) - Dale Gardner, Media Ambassador for Ataxia UK, lives with Friedreich’s ataxia, but despite its challenges, he talks about how strong and proud he is. At 26 I had no symptoms or even knowledge of ataxia. That was until one day when I visited the cinema with friends. Afterwards, they dropped me off and as I walked to the front door, I turned
- [We're due North: are you ready for the races?](https://www.ataxia.org.uk/ataxia-uk-news/were-due-north-are-you-ready-for-the-races/) - Join #TeamAtaxiaUK and sign up to one of our races today.
- [The EPIC 3-day Cycle](https://www.ataxia.org.uk/your-fundraising-stories/the-epic-3-day-cycle/) - Be inspired by Richard Bradford and his fantastically successful event, the EPIC 3-day Cycle.
- [My 12 in 12: James Tattersall](https://www.ataxia.org.uk/your-fundraising-stories/my-12-in-12-james-tattersall/) - James Tattersall was introduced to ataxia after meeting his girlfriend in 2015. He has now completed 12 marathons in 12 months, supporting people affected by ataxia. Here is his journey.
- [The Big Give Christmas Challenge: Ann's story](https://www.ataxia.org.uk/your-blog/the-big-give-christmas-challenge-anns-story/) - Ann tells us about her granddaughter's challenges accessing care for her ataxia and the lengthy travels the members of the Support Group have to go on.
- [The Big Give Christmas Challenge: Gemma's story](https://www.ataxia.org.uk/your-blog/the-big-give-christmas-challenge-gemmas-story/) - Gemma faces many challenges when travelling to get the card she needs. Read her story here.
- [The Big Give Christmas Challenge: Georgia's story](https://www.ataxia.org.uk/your-blog/the-big-give-christmas-challenge-georgias-story/) - Living in North England, Georgia has to travel a long way to access the care she needs for her ataxia.
- [The Mark Dower Trust](https://www.ataxia.org.uk/16-30/the-mark-dower-trust/) - The Mark Dower Trust offers a grant to promote independence for people aged between 16 and 30 with ataxia. Find out more here.
- [AMRC releases annual research expenditure statistics](https://www.ataxia.org.uk/research-news/amrc-releases-annual-research-expenditure-statistics/) - The AMRC has released their expenditure statistics for 2018.
- [AMRC Impact Report](https://www.ataxia.org.uk/research-news/amrc-impact-report/) - The AMRC Impact Report highlights the concrete ways that medical research charities make a difference to people and society through the research they fund
- [The impact of Ataxia UK-funded Research](https://www.ataxia.org.uk/ataxia-uk-news/the-impact-of-ataxia-uk-funded-research/) - Ataxia UK's involvement with AMRC's report on the impact of medical charity-funded research!
- [Latest Research News - May and June 2017](https://www.ataxia.org.uk/research-news/latest-research-news-may-and-june-2017/) - Read up on the latest research news!
- [Christmas gifts from our Friends](https://www.ataxia.org.uk/ataxia-uk-news/christmas-gifts-from-our-friends/) - Order some Christmas gifts and cards from two of our talented Friends, Arran Eleanor Rigney and Holly Hipwell!
- [Down by the Riverside Festival](https://www.ataxia.org.uk/ataxia-uk-news/down-by-the-riverside-festival/) - Ataxia UK is chosen for charity partner of art, music and outdoor theatre festival in Lancashire
- [AMRC Impact Report: Ataxia UK Case Study Featured](https://www.ataxia.org.uk/research-news/amrc-impact-report-ataxia-uk-case-study-featured/) - Ataxia UK's involvement with AMRC's report on the impact of medical charity-funded research.
- [Now that's what Ataxia UK calls lockdown](https://www.ataxia.org.uk/ataxia-uk-news/now-thats-what-ataxia-uk-calls-lockdown-2/) - Self-isolation can be lonely and boring. That's why we have created a series of online activities to bring the ataxia community together!
- [365 days of shorts](https://www.ataxia.org.uk/your-fundraising-stories/365-days-of-shorts/) - The incredibly motivated man David Arnold is wearing shorts every day during 2019. Read his story here.
- [“Winning the European Team Silver Medal was indescribable, a dream come true"](https://www.ataxia.org.uk/your-blog/winning-the-european-team-silver-medal-was-indescribable-a-dream-come-true/) - Here is Mari Durward-Akhurst to tell the story of her incredible achievement, and the roots of her riding.
- ["Everyday is Different Depending on my Stability"](https://www.ataxia.org.uk/your-blog/everyday-is-different-depending-on-my-stability/) - David has late-onset spinocerebellar ataxia type 6 and has written a blog about different forms of mobility assistance in hope that it will help anyone considering to purchase one.
- [The International Ataxia Research Conference 2019 in Washington DC was a great success](https://www.ataxia.org.uk/research-news/the-international-ataxia-research-conference-2019-in-washington-dc-was-a-great-success/) - Ataxia UK representatives attended the 3rd international ataxia research conference, organised by Ataxia UK, FARA, FARA Australia and GoFAR, took place on 14-16 November 2019.
- [The Big Give Christmas Challenge: Ceri's story](https://www.ataxia.org.uk/your-blog/the-big-give-christmas-challenge-ceris-story/) - Ceri shares with us how important access to better care would be a dream to her family.
- [The Big Give Christmas Challenge: Taryn’s Story](https://www.ataxia.org.uk/your-blog/the-big-give-christmas-challenge-taryns-story/) - This Christmas Taryn tells us how access to appropriate care would benefit her life.
- [Disordered not drunk: Laura's story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-lauras-story/) - Laura shares with us a time at university that filled her with anger and shame.
- [Disordered not Drunk: Derek's story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-dereks-story/) - Derek has had accusations thrown at him about being drunk, but he uses this opportunity to explain what ataxia is.
- [The Edgson family: Kathy, Kizzy and the pets](https://www.ataxia.org.uk/your-blog/the-edgson-family-kathy-kizzy-and-the-pets/) - Kathy has cerebellar ataxia and her daughter, Kizzy, is her carer. Together, they have started a blog to share their outings and tips with you.
- [My journey to an ataxia diagnosis](https://www.ataxia.org.uk/your-blog/my-journey-to-an-ataxia-diagnosis/) - Ataxia is so rare that it can take years for people to receive a correct diagnosis. David shares his journey here.
- [Blue badge, Hynt and Live access cards](https://www.ataxia.org.uk/your-blog/blue-badge-hynt-and-live-access-cards/) - After their brilliant introduction story a couple of weeks ago, Kizzy and Kathy are back to share some more useful tips with you!
- [Completing a half marathon, go Maisie!](https://www.ataxia.org.uk/your-blog/completing-a-half-marathon-go-maisie/) - Nine year old Maisie and her family were over the moon when she completed the Plymouth half marathon. Here is her mum, Stacey, to tell the fantastic story!
- [The Big Give Christmas Challenge 2019](https://www.ataxia.org.uk/ataxia-uk-news/the-big-give-christmas-challenge-2019/) - We're joining the Big Give again this year to improve access to healthcare.
- [Disordered not Drunk: Tara's Story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-taras-story/) - Tara shares a difficult story of a time when someone accused her of being drunk, and another time she was unable to explain her condition by herself.
- [Disordered not drunk: Dan’s story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-dans-story/) - Dan shares a story that left him feeling embarrassed and upset, and how the situation could have been helped.
- [Your guide to winter: fun and accessible ideas!](https://www.ataxia.org.uk/ataxia-uk-news/your-guide-to-winter-fun-and-accessible-ideas/) - A guide on finding fun and exciting ideas for accessible days out this winter.
- [My 12 in 12: Donna Vant](https://www.ataxia.org.uk/your-fundraising-stories/my-12-in-12-donna-vant/) - As New Year's Day sprung in 2017, Donna decided to begin raising money to support people with ataxia by participating in the 12 in 12 challenge. Donna tells us her story and what this journey means to her.
- [International Ataxia Research Conference (IARC) 2019 - Save the date!](https://www.ataxia.org.uk/research-news/international-ataxia-research-conference-iarc-2019-save-the-date/) - Ataxia UK, GoFAR, FARA US and FARA Australia are pleased to announce the date of 3rd International Ataxia Research Conference.
- [Your voice: your message](https://www.ataxia.org.uk/ataxia-uk-news/your-voice-your-message/) - Ensuring your voice is at the forefront of communications about ataxia
- [Ataxia: my poem](https://www.ataxia.org.uk/your-blog/ataxia-my-poem/) - Read this expressive poem about ataxia, and how it affects Linda's everyday life.
- [The Road Travelled So Far](https://www.ataxia.org.uk/your-blog/the-road-travelled-so-far/) - Here, Jason shares the journey of his ataxia diagnosis; the things he has lost along the way and how his mindset is now.
- [Places to Change: working towards social inclusion](https://www.ataxia.org.uk/your-blog/places-to-change-working-towards-social-inclusion/) - Kimberley has started the very important campaign 'places to change', here she shares the reasons behind it.
- [Congratulations, me! Beka's Story](https://www.ataxia.org.uk/your-blog/congratulations-me-bekas-story/) - "I don’t even feel like I had a childhood. I mean, I still grew older but it seemed the older I got, the worse I got. Symptoms. Hospital appointments. Diagnosis. More, and worse, symptoms. Hospital appointments."
- [Praying for the Future: Tallulah's story](https://www.ataxia.org.uk/your-blog/praying-for-the-future-tallulahs-story/) - "There was no one to tell me how I should handle all this, no one who could point me in the right direction, no one to teach me how to manage my symptoms."
- [Support for Seb: our son's story](https://www.ataxia.org.uk/your-blog/support-for-seb-our-sons-story/) - "A Specialist Ataxia Centre for children could help us find treatments that are effective now. Seb could be well; could develop; could enjoy his childhood, without the barriers that ataxia brings."
- [Better care for Kayden: our son's story](https://www.ataxia.org.uk/your-blog/better-care-for-kayden-our-sons-story/) - "Nothing could prepare me for what I was about to hear: “he's lucky to have even lived past two years.”
- [Jo-Jo's Journey: moving forward](https://www.ataxia.org.uk/your-blog/jo-jos-journey-moving-forward/) - "Children meeting Jo-Jo for the first time are wary, they just don’t seem to know how to play with her. Her walking frame is a quite literally a barrier to intimacy. They don’t want to hold her hand at a party."
- [Judged and jaded: our family's story](https://www.ataxia.org.uk/your-blog/judged-and-jaded-our-familys-story/) - "Her school thought we were making it up; they thought I'd fabricated her ataxia. They put Jade on the child protection register."
- [Our children's stories](https://www.ataxia.org.uk/your-blog/our-childrens-stories/) - These are the children you're helping this Christmas by donating to The Big Give: one day left.
- [Neurological Alliance survey: taking control of your healthcare](https://www.ataxia.org.uk/ataxia-uk-news/neurological-alliance-survey-taking-control-of-your-healthcare/) - Until 22 March, the Neurological Alliance are running one of the most important surveys out there for patients with neurological disorders. Take the opportunity for your thoughts about your healthcare be heard and help us improve our own services. The Neurological Alliance is seeking responses to its third patient experience survey from people receiving treatment
- [The Diagnosis](https://www.ataxia.org.uk/your-blog/the-diagnosis/) - Deanna tells us about receiving her Friedreich's ataxia diagnosis, humorously listing the pros and cons of having the condition, and how her attitude towards life has changed since.
- [Running the Dubai Marathon](https://www.ataxia.org.uk/your-fundraising-stories/running-the-dubai-marathon/) - Andrew Cregreen runs the Dubai Marathon for his friend, Macca, who has FA.
- [A Merry Medoc Marathon](https://www.ataxia.org.uk/your-fundraising-stories/a-merry-medoc-marathon/) - On 9 September, Holly Clibbon ran the Medoc Marathon for Ataxia UK – a race that takes runners through the vineyards of Bordeaux!
- [The Lowes Down Under: David's story](https://www.ataxia.org.uk/your-blog/the-lowes-down-under-davids-story/) - David Lowe was awarded the Jerry Farr Travel Fellowship in 2016 that allowed him and his wife, Glenys, to visit Australia.
- [Ataxia Fractures Lives](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-fractures-lives/) - Ataxia awareness comes to Derby this July. Help us spread the word.
- [Hope the Bear joins Ataxia UK!](https://www.ataxia.org.uk/ataxia-uk-news/hope-the-bear-joins-ataxia-uk/) - Hope the Bear, named by you, joins the staff at the Ataxia UK office.
- [UK Premiere of The Ataxian](https://www.ataxia.org.uk/ataxia-uk-news/uk-premiere-of-the-ataxian/) - Hear all about the UK's first screening of The Ataxian, who attended, and how it went!
- [Strutt & Parker Carols service](https://www.ataxia.org.uk/ataxia-uk-news/strutt-parker-carols-service/) - Many thanks to Strutt & Parker for supporting Ataxia UK at their Christmas carol service last week, raising over £800 through donations!
- [Our Friends' Blogs](https://www.ataxia.org.uk/your-blog/our-friends-blogs/) - A list of personal blogs, articles and thoughts that our Friends would like to share with the ataxia community.
- [When Life Gives you Lemons, Start a Business](https://www.ataxia.org.uk/your-blog/when-life-gives-you-lemons-start-a-business/) - Arran Eleanor Rigney started a company after learning of her ataxia diagnosis. She aims to help smaller businesses get noticed through her marketing skills, as well as employing her artistic talents to sell her exclusive range of Christmas cards to raise money for Ataxia UK.
- [My “Three in Four” Challenge](https://www.ataxia.org.uk/your-blog/my-three-in-four-challenge/) - Michelle Brown tells us about the many races she ran in very quick succession this autumn, in support of her father and fundraising for Ataxia UK.
- [Being a father with ataxia: Richard's story](https://www.ataxia.org.uk/your-blog/being-a-father-with-ataxia-richards-story/) - Richard Brown was diagnosed with Friedreich’s ataxia at 14. It had a devastating impact on what things he thought he could do in life. Here, Richard takes us through his thought process in becoming a parent with ataxia.
- [My FA-mily: Laura's story](https://www.ataxia.org.uk/your-blog/my-fa-mily-lauras-story/) - Laura Bishop is 25 and was diagnosed with Friedreich’s ataxia ten years ago. Having dealt with the difficulty of facing the condition as a teenager and the trauma of two serious operations, Laura has come to terms with her ataxia, but is still fearful about what the future will hold…
- [Something old, something new](https://www.ataxia.org.uk/your-blog/something-old-something-new/) - To kick off our Friend's blog is our regular contributor to the Ataxia Magazine, Matthew Law. Matthew writes a series on advice and adaptations, and here is one of his first articles for what was then The Ataxian in 2013.
- [Wind-up merchant](https://www.ataxia.org.uk/your-blog/wind-up-merchant/) - Continuing Matthew Law's series on Adapting to Life advice series, here is his article from the 2013 Summer issue of the Ataxia Magazine.
- [Writing The Legacy of Marie Schlau](https://www.ataxia.org.uk/your-blog/writing-the-legacy-of-marie-schlau/) - A unique group of co-authors who have two things in common: the ability to write historical, heartfelt horror, and the desire to fundraise towards finding a cure for FA.
- [Thanks for the Trike](https://www.ataxia.org.uk/your-blog/thanks-for-the-trike/) - Richard Brown talks about crowdfunding for his own trike, taking his needs into his own hands.
- [Around the World in a Yacht](https://www.ataxia.org.uk/your-blog/around-the-world-in-a-yacht/) - It took almost ten years for Geoff Brown to receive his diagnosis; in that time he has become a wheelchair user and almost entirely lost his sight. Nevertheless, Geoff is still intending to follow his dreams.
- [Theo’s Diary – The Observations of an Indulged Cat](https://www.ataxia.org.uk/your-blog/theos-diary-the-observations-of-an-indulged-cat/) - Lisa Murphy, author of Theo's Diary: The Observations of an Indulged Cat, tells us how writing has had a positive impact on her mental health.
- [Removing Barriers by Toyah Wordsworth](https://www.ataxia.org.uk/your-blog/removing-barriers-by-toyah-wordsworth/) - Toyah Wordsworth discusses how volunteering and employment gave her the confidence to create her own business, and a board game to help younger people become further educated about disability.
- [Exeter PR Campaign Success](https://www.ataxia.org.uk/ataxia-uk-news/exeter-pr-campaign-success/) - The Exeter Branch of Ataxia UK took ataxia to the streets this June for a successful awareness campaign, rising local awareness of ataxia to 41%.
- [My super power](https://www.ataxia.org.uk/your-blog/my-super-power/) - Matthew Law tells us about his wheelchair (2013) and what a difference it made to his life after retirement.
- [Let’s talk about diagnosis… with Leeann and Kieran](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-leeann-and-kieran/) - Leeann started noticing symptoms in Kieran from four years old, but it wasn't until three years later they received a diagnosis.
- [Let’s talk about diagnosis… with Melissa and Ivy](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-melissa-and-ivy/) - Melissa tells us about her daughter Ivy who is struggling to find a cause for her ataxia.
- [Cruel consequence of ataxia unawareness](https://www.ataxia.org.uk/your-blog/cruel-consequence-of-ataxia-unawareness/) - Our Media Ambassador, Annabel Wilford, shares a story about her grandma who has ataxia and experienced prejudice due to her ataxic symptoms.
- [Helpline update](https://www.ataxia.org.uk/ataxia-uk-news/helpline-update/) - New Helpline opening times and update on welfare grants.
- [Spooky Fundraising For Halloween](https://www.ataxia.org.uk/uncategorised/spooky-fundraising-for-halloween/) - Halloween is just round the corner and why not have some fun with some spooky fundraising?!
- [The importance of support: before and after receiving a diagnosis](https://www.ataxia.org.uk/your-blog/the-importance-of-support-before-and-after-receiving-a-diagnosis/) - Ami Hook-Ireland shares her story of the challenges she faced living with ataxia and how ongoing support made a positive difference in her life.
- [A Time for Reflection](https://www.ataxia.org.uk/your-blog/a-time-for-reflection/) - The measure is always in dusting yourself off, and to keep trying until all the incredible hard work sticks
- [Ataxia VS Covid-19](https://www.ataxia.org.uk/your-blog/ataxia-vs-covid-19/) - This strange new reality feels like a temporary apocalypse, an unwelcome interruption to our daily norms
- [My emotional struggle with ataxia: part one](https://www.ataxia.org.uk/your-blog/my-emotional-struggle-with-ataxia-part-one/) - In part one of Beth's story, she explores and discusses her emotional journey with having ataxia.
- [My emotional struggle with ataxia: part two](https://www.ataxia.org.uk/your-blog/my-emotional-struggle-with-ataxia-part-two/) - After Beth's first blog post focusing on her emotional challenges with ataxia, this time she looks at physical challenges.
- [The Mark Dower Trust: Emma Keogh](https://www.ataxia.org.uk/ataxia-uk-news/the-mark-dower-trust-emma-keogh-2/) - Emma applied to the Mark Dower Trust for a grant towards an exercise bike. After successfully receiving the grant, here she tells us about it.
- [Life can change in a heartbeat](https://www.ataxia.org.uk/your-blog/life-can-change-in-a-heartbeat/) - An ataxia diagnosis never comes lightly, but for Kate Davenport and her daughter, it was a life-changing shock. Read her story here.
- [Telephone notice](https://www.ataxia.org.uk/ataxia-uk-news/telephone-notice/) - Our telephones lines may be down for the next few weeks, click here for more information.
- [COVID-19 !&A Webinar](https://www.ataxia.org.uk/latest-news/covid-19-a-webinar/) - We are very pleased that Prof Giunti and Suzanne Booth from the London UCL/UCLH Ataxia Centre have offered to run another webinar session for advice surrounding the current Covid-19 guidelines and how they might impact people with ataxia. Previous webinars by this team have been really helpful in highlighting important advice for people with ataxia,
- [Update From Us](https://www.ataxia.org.uk/latest-news/update-from-us/) - Due to current circumstances, staff at Ataxia UK are working from home. The helpline is still running and you can access this on the usual number 0800 995 6037. It's open Monday to Thursday 10.30am to 2.30pm. We are using a skeleton-staff model so post can be opened and cheques processed once a week. We are in
- [Let’s talk about diagnosis… with Kelly and James](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-kelly-and-james/) - Despite the amount of medical professionals James has seen, Kelly tells us that they still have no confirmed diagnosis for James.
- [Update from us](https://www.ataxia.org.uk/ataxia-uk-news/update-from-us-2/) - Staff are working from home due to Covid-19, find out how you can contact the office.
- [Advice from ataxia specialists on Covid-19](https://www.ataxia.org.uk/covid-19/advice-from-ataxia-specialists-on-covid-19/) - This guidance is based on information from the lead neurologists at the London UCL/UCLH and Sheffield Ataxia Centres. We are monitoring the situation and will update our guidance accordingly. Covid-19 is a new virus and there is much that we do not know/understand about it, however we do know that people with ataxia can experience
- [PCT Webinar](https://www.ataxia.org.uk/research-news/pct-webinar/) - Listen to our webinar now!
- [Survey - Your Feedback on our Support](https://www.ataxia.org.uk/ataxia-uk-news/survey-your-feedback-on-our-support/) - We are seeking the views and experiences of people affected by ataxia in our first major survey for 12 years. The survey has been sent to all the recipients of the Ataxia Magazine. It is important that we regularly review people’s situation and what we provide, to ensure we continue to meet the needs of
- [#UnderTheUmbrella](https://www.ataxia.org.uk/ataxia-uk-news/undertheumbrella/) - Here at Ataxia UK we are getting #UnderTheUmbrella for #WorldBrainDay - raising awareness for brain disorders! Did you know that 1 in 3 people suffer from a brain disorder? It is our hope that the Together Under the Umbrella campaign will lead to an increase in public, political and scientific support for all brain and brain-related
- [City Bridges Challenge 2016 Success!](https://www.ataxia.org.uk/ataxia-uk-news/city-bridges-challenge-2016-success/) - Last Sunday on September 18th, the City of London was host to over 100 Ataxians who had a mission: to walk from three to six miles and across six bridges, and to raise money and awareness for Ataxia UK.
- [Maxim-um Support!](https://www.ataxia.org.uk/your-fundraising-stories/maxim-um-support/) - Thank you for all of your amazing support!
- [MRN - Charity of the Year](https://www.ataxia.org.uk/ataxia-uk-news/mrn-charity-of-the-year/) - We are delighted to announce that MRN have chosen Ataxia UK as their charity of the year for 2016! The Medical Research Network is the largest global provider of Home Healthcare and Site Nurse Support solutions for the clinical trials industry. A team from MRN will be taking part in September's City Bridges Challenge. You can donate to the team's efforts
- [Wellcome Trust Monitor Results](https://www.ataxia.org.uk/ataxia-uk-news/wellcome-trust-monitor-results/) - The results of the latest Wellcome Trust Monitor show how the public feels about science and medical research.
- [John’s 104-mile Bike Ride!](https://www.ataxia.org.uk/your-fundraising-stories/johns-104-mile-bike-ride/) - Friday 29th July 2016
- [Jerry Farr Travel Fellowship 2015: Holly Hipwell](https://www.ataxia.org.uk/ataxia-uk-news/jerry-farr-travel-fellowship-2015-holly-hipwell/) - Holly Hipwell was the recipient of the 2015 Jerry Farr Travel Fellowship - a scheme dedicated to broadening the horizons of those with ataxia, through the medium of travel. For more information on the scheme, click here. In Holly's own words, she shares her incredible experience with us! I have just returned from my trip
- [Rare Disease Day 2016](https://www.ataxia.org.uk/ataxia-uk-news/rare-disease-day-2016/) - How we were involved...
- [Read all about it...](https://www.ataxia.org.uk/ataxia-uk-news/read-all-about-it/) - Never let your ataxia define you...as these people have demonstrated!
- [London to Paris](https://www.ataxia.org.uk/your-fundraising-stories/london-to-paris/) - We're delighted to tell you about more fundraising efforts courtesy of the Steege family! You may remember from a previous post that Joanna Steege and Richmond Golf Club helped to raise a whopping £8,000 last year, whilst her daughter Isabel ran the Cheltenham Half Marathon, raising an additional £2,500 a few months back. Last month Joanna's niece, Hannah Willcock, along
- [Covid-19 Q&A webinar](https://www.ataxia.org.uk/ataxia-uk-news/covid-19-qa-webinar/) - Watch a recording of our webinar with Prof Paola Giunti and Ataxia Nurse Suzanne Booth.
- [Christmas Closure: AUK's office hours](https://www.ataxia.org.uk/ataxia-uk-news/christmas-closure-auks-office-hours/) - Office and Helpline closing dates this Christmas
- [Campaign for Friendship ID cards](https://www.ataxia.org.uk/ataxia-uk-news/campaign-for-friendship-id-cards/) - Thank you for all those who joined our campaign for our new ID cards that will help to stop discrimination against the ataxia community.
- [Belper Games 2016](https://www.ataxia.org.uk/ataxia-uk-news/belper-games-2016/) - The Annual Belper Games returns this July
- [Ataxia UK's Scottish Conference postponed](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-uks-scottish-conference-postponed/) - Due to circumstances with the spread of coronavirus, Ataxia UK has decided to postpone the Scottish Conference which was due to happen in June 2020.
- [Ataxia UK on Instagram](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-uk-on-instagram/) - Join our Instagram channel, (re)launching 7 July!
- [Ataxia UK “I’m not drunk” ID card](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-uk-im-not-drunk-id-card/) - Ataxia UK I'm not drunk awareness ID cards.
- [The affects of ataxia](https://www.ataxia.org.uk/your-blog/adrians-story/) - In part one of Adrian's story, he talks about early signs of ataxia and its affect on his career and life. In late 2016 I went to the doctor because my wife had noticed me losing my balance and tripping over a lot. The doctor had me perform several exercises and when it came to trying to
- [Ataxia Awareness Day 2015](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-awareness-day-2015/) - The ataxia's are a rare group of neurological conditions that affect (amongst other things) balance, coordination, and speech. There are many different types of ataxia that can affect people in different ways.A recent poll showed that only 10% of the UK population have heard of ataxia. On 25th September every year, we ask our Friends to
- [Ataxia Awareness Campaign](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-awareness-campaign/) - Our website page for the Ataxia Awareness Campaign in Exeter is now live!
- [Annual Conference Success](https://www.ataxia.org.uk/ataxia-uk-news/annual-conference-success/) - On 2nd & 3rd October, we hosted our annual conference at the Radisson Blu Stansted. The weekend, which is always the highlight of the Ataxia UK calendar year, was a mix of updates, advice and workshops across the ataxia condition. Ataxia UK patron Paul Coia, who once again helped to host the conference. Dr. Ossie StuartOnce again
- [Announcing partnership with Origin Broadband](https://www.ataxia.org.uk/ataxia-uk-news/announcing-partnership-with-origin-broadband/) - Origin Broadband team up with Ataxia UK to support ataxia research.
- [Announcing new ataxia awareness campaign: Derby](https://www.ataxia.org.uk/ataxia-uk-news/announcing-new-ataxia-awareness-campaign-derby/) - The Belper Games and Ataxia UK team up for new campaign!
- [Administration Assistant](https://www.ataxia.org.uk/ataxia-uk-news/administration-assistant/) - Work for Ataxia UK as our new Administration Assistant!
- [Accessibility changes](https://www.ataxia.org.uk/ataxia-uk-news/accessibility-changes/) - To ensure the Ataxia Magazine is accessible for everyone, it has gone through some changes, which you may have noticed in issue 205 - find out what they are here.
- [A Marathon Effort](https://www.ataxia.org.uk/ataxia-uk-news/a-marathon-effort/) - A huge Ataxia UK thank you to all our marathon runners!
- [16-30's Summer Spin-off Tickets on Sale](https://www.ataxia.org.uk/ataxia-uk-news/16-30s-summer-spin-off-tickets-on-sale/) - The Mark Dower Trust and Ataxia UK tem up to host the first ever 16-30's breakaway event this 1 and 2 July.
- [2015 IARC a resounding success](https://www.ataxia.org.uk/ataxia-research-conferences/2015-iarc-a-resounding-success/) - About ARC-2015 The International Ataxia Research Conference 2015 took place in Windsor, England on the 25th-28th of March. It was hailed as a great success for the advancement of Ataxia research with new collaborations being formed and ground breaking research being presented. Delegates arrived from all over the world to discuss the latest research in the Ataxias, and around
- [Virtual Halloween 5km Run!](https://www.ataxia.org.uk/uncategorised/virtual-halloween-5km-run/) - Sign up for the Halloween 5km run and complete it on or before 31 October to get your spooky medal!
- [Vote For Ataxia UK To Win Cash!](https://www.ataxia.org.uk/uncategorised/vote-for-ataxia-uk-to-win-cash/) - Each month, My Favourite Voucher Codes gives 20% of their profits to charity - Ataxia UK is part of October's competition so please help us win by voting!
- [Rare Disease Day 2021](https://www.ataxia.org.uk/uncategorised/rdd21/) - Add the 28 February 2021 to your diaries and join us on social media as we raise awareness of ataxia. Rare is Many, Rare is Strong, Rare is Proud. A fantastic way to raise awareness is to share your story. Tell us how your ataxia makes you strong and proud in the form of: A
- [News updates](https://www.ataxia.org.uk/uncategorised/news-updates/) - Friday 5 February 2021 Paola Giunti has confirmed that patients from the London Ataxia Centre are being called by text for vaccination by UCLH. If you receive this text and take up the invitation, you will receive the Pfizer vaccine.
- [Photos from the Anniversary Ball](https://www.ataxia.org.uk/ataxia-uk-news/photos-from-the-anniversary-ball/) - A selection of snaps from the 2015 Anniversary Ball!
- [2016 Spring Classic](https://www.ataxia.org.uk/ataxia-uk-news/2016-spring-classic/) - The Spring Classic is Back!
- [Mother Daughter](https://www.ataxia.org.uk/ataxia-uk-news/mother-daughter/) - A few months back we shared with you an audio documentary recorded by Georgina Palzeaird entitled 'Living with ataxia'. You can check out Georgina's first documentary via this link. Following on from this, Georgina has put together another wonderful piece. The second documentary features the dynamic between mother and daughter, when the former has ataxia.The documentary
- [Ceri Leather is Fundraising!](https://www.ataxia.org.uk/your-fundraising-stories/ceri-leather-is-fundraising/) - Ceri Leather is carrying out an incredible fundraising journey this year in aid of Ataxia UK. Ceri's dad was diagnosed with ataxia in the last two year's after a lengthy struggle to achieve a specific diagnosis. His first consultant simply put his failing health down to 'old age'. In this time his health has deteriorated and
- [Living With Ataxia](https://www.ataxia.org.uk/ataxia-uk-news/living-with-ataxia/) - Lincoln University student Georgina Palzeaird has put together this fantastic 'living with ataxia' documentary as part of her Media Studies course. As part of the project she came into the Ataxia UK office and interviewed our C.E.O Sue Millman, as well as our Research Projects Manager, Julie Greenfield and volunteer Tim Kahn (who has ataxia himself). Not only was the project
- [Bridges Walk Success!](https://www.ataxia.org.uk/your-fundraising-stories/bridges-walk-success/) - After weeks of preparation, planning and anticipation, the City Bridges Walk was finally upon us...and what a day we had!
- [Bawburgh Charity Dip](https://www.ataxia.org.uk/your-fundraising-stories/bawburgh-charity-dip/) - Rupert Hipwell shares his story... "Have you ever tried participating in a live radio interview on BBC Radio to discuss ataxia while at the same time rolling up 250 dates and chestnuts in strips of streaky bacon? I have, and it's not easy. Fortunately, most of the listeners to Chrissy Jackson's programme on Radio Norfolk
- [A Toast to Joanna Steege](https://www.ataxia.org.uk/your-fundraising-stories/a-toast-to-joanna-steege/) - We would like to say a big thank you to the efforts of Joanna Steege, who alongside her friends and family have been exemplary supporters of our work for a number of years.Last year Joanna and Richmond Golf Club helped to raise a whopping £8,000, whilst her daughter Isabel ran the Cheltenham Half Marathon, raising an additional £2,500 in the
- [Land's End to John O'Groats](https://www.ataxia.org.uk/your-fundraising-stories/lands-end-to-john-ogroats/) - Rick Pethen took part in a mammoth bike ride with three friends in September, raising just over £2000 for AUK. One of the highlights of the trip for Rick and the others was the enjoyment of the autumn countryside, especially through the West Country, the Wye Valley, and all through Scotland. He said ‘that travelling
- [Community fundraising](https://www.ataxia.org.uk/your-fundraising-stories/community-fundraising/) - A big thank you is in order to Barry and Christine Ellis who organised a raffle for their local community in Marlborough, raising £100 in the process for Ataxia UK. We would also like to thank their local Waitrose branch for supplying a few of the raffle prizes. Raffle tickets were also drawn by next door neighbours,
- [Ataxia - By Ruth Chalkley](https://www.ataxia.org.uk/your-blog/ataxia-by-ruth-chalkley/) - We are delighted to share with you this creative, yet thought-provoking ataxia poem, courtesy of Ruth Chalkley.
- [Charity of the Year...](https://www.ataxia.org.uk/ataxia-uk-news/charity-of-the-year/) - Quantuma, the restructuring and insolvency specialist have announced Ataxia UK as their official charity of the year!
- [Ataxia Spring Classic 2018](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-spring-classic-2018/) - The Annual cycle ride for Ataxia UK, hosted by Andy Downie, Trustee of Ataxia UK.
- [Ataxia UK Christmas cards: now on sale](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-uk-christmas-cards-now-on-sale/) - Christmas cards now on sale from the Ataxia UK website shop!
- [My life with episodic ataxia](https://www.ataxia.org.uk/your-blog/my-life-with-episodic-ataxia/) - Tim Wahl talks about the challenges that episodic ataxia has presented throughout his life. My life with episodic ataxia includes a long succession of medical specialists and a spectrum of diagnoses— “mild” epilepsy, migraine, vasovagal syncope, and hypoglycaemia. The one that took the prize was “anticipatory anxiety.” Ineffective medicines from anti-convulsive and anti-depressants to tranquillisers
- [Ataxia Magazine 212](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-212/)
- [Ataxia Magazine 211](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-211/)
- [Researching the financial circumstances of Ataxia UK Friends](https://www.ataxia.org.uk/ataxia-uk-news/financial-circumstances/) - In October 2019 Ataxia UK commissioned Nick Hopkins Consulting to carry out a research project exploring the financial inclusion related experiences of people with ataxia. The aim of the research was to provide an evidence base to guide Ataxia UK’s future financial inclusion related information, support and advice provision and campaigning/ influencing activities. The report
- [A Box of Delights](https://www.ataxia.org.uk/ataxia-uk-news/a-box-of-delights/) - 'An enchanting story of old magic, good and evil'...On Sunday 6th December the Livewire Theatre Company are performing 'A Box of Delights' in aid of Ataxia UK at the Samuel Pepys Theatre, St. Paul’s School, Lonsdale Rd, London, SW13 9JT. The Livewire Theatre Company began life in 1999 and have performed consistently both at The
- [IARC 2019](https://www.ataxia.org.uk/ataxia-research-conferences/iarc-2019/) - The latest IARC was held in 2019 in Washington, DC. It was organised by Ataxia UK, FARA, FARA Australia and GoFAR, and was a great success, with over 400 attendees.
- [IARC 2017](https://www.ataxia.org.uk/ataxia-research-conferences/iarc-2017/) - Ataxia UK together with FARA and GoFAR organised the second edition of International Ataxia Research conference, held in Pisa in September 2017. This was the largest research conference on ataxia ever organised.
- [Jan-16](https://www.ataxia.org.uk/research-news/research-news-archive/jan-16-2/) - TEXT
- [Feb-16](https://www.ataxia.org.uk/research-news/research-news-archive/feb-16-2/) - Ataxia UK welcomes the news that Leiden-based biotech company ProQR are expanding their research interests and are now working on Friedreich’s ataxia. Dr Julie Greenfield, Ataxia UK’s Research Manager says ‘We first met with Sarah Hafith, ProQR’s business and operations manager, at the World Orphan drug conference in November 2014 and discussed the ataxias as
- [Get involved](https://www.ataxia.org.uk/16-30/get-involved/) - Being part of the 16-30's group means you can join in with various events going on. Click here to find out what's on offer!
- [Book competition! (Closed)](https://www.ataxia.org.uk/ataxia-uk-news/book-competition/) - We're giving away a signed copy of I'm Fine, Thanks by Chris Doveton! I'm Fine, Thanks is a heart-wrenching story of love, grief and redemption; giving the reader tools and inspiration to overcome life's struggles and find hope during the darkest of times. This page-turning memoir follows the journey of Chris and his wife Anne,
- [Flu jab for those with ataxia](https://www.ataxia.org.uk/covid-19/flu-jab-for-those-with-ataxia/) - The NHS guidance states anyone with a chronic neurological condition should be offered the flu vaccine for free. The guidance indicates that your GP should assess to take into account the risk of flu making any underlying illness worse, as well as risk of serious illness from flu itself. Any infection makes ataxia worse, therefore most GP's
- [An accessible break away!](https://www.ataxia.org.uk/your-blog/an-accessible-break-away/) - My name is Mari, I am 26 years old and have ataxia. I am a Media Ambassador for Ataxia UK and this is my first blog. Due to Covid-19 my family decided to have a break in the UK. We looked for somewhere that was fully accessible for me as I am a full-time wheelchair
- [Are you classed as 'extremely vulnerable'?](https://www.ataxia.org.uk/covid-19/are-you-classed-as-extremely-vulnerable/) - Registering as extremely vulnerable to qualify for extra support Many people with underlying health conditions have already received notifications to advise staying inside for 12 weeks to self-isolate. You can find a list of different conditions that class as 'extremely vulnerable' here. If you were expecting to be included in this, and are not, you
- [Lockdown online activities](https://www.ataxia.org.uk/covid-19/lockdown-online-activities/) - Now that is what I call Lockdown Ataxia UK have created weekly activity sessions you can access from the comfort of your own home. These sessions will be held every Friday from 1pm-2pm, so you can even participate in your lunch break if working from home. The sessions will be based on a separate theme
- [Surviving and keep going!](https://www.ataxia.org.uk/your-blog/keep-going/) - Martha has struggled with ataxia for over 30 years, here she tells us about her past careers. I’m Martha and I am the fourth generation with hereditary ataxia in my family. I have struggled with ataxia for over 30 years. Since I was a child I’ve always aspired to sing on Broadway (1956 - understudy
- [3P3AKS](https://www.ataxia.org.uk/fundraisers/3p3aks/) - Nancy Quinn
- [The Big Give Christmas Challenge 2020](https://www.ataxia.org.uk/latest-news/the-big-give-2020/) - One week... one donation... DOUBLE the impact you can make to the future of the Ataxia UK Helpline and research. Click here to double your donation! This Christmas we have, once again, teamed up with The Big Give and have secured a match funding pot of £30,000 from which your Christmas donations can be DOUBLED
- [A Momentous Year](https://www.ataxia.org.uk/your-fundraising-stories/a-momentous-year/) - As Ataxia UK celebrates its 50th anniversary, the East of Scotland Branch are this year celebrating their own milestone: 20 years as a Branch.
- [Shannon Steals the Show!](https://www.ataxia.org.uk/your-fundraising-stories/shannon-steals-the-show/) - Here'a a little video we thought we would share with you of the very talented Shannon Bull, daughter of Jim and Kerry, serenading the crowd at the 2016 Belper Games.
- [Wellbeing survey report](https://www.ataxia.org.uk/ataxia-uk-news/wellbeing-survey-report/) - Read the results of our InControl Wellbeing Survey, distributed in June 2020.
- [Ataxia Magazine 204](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-204/) - NHS Genomic Medicine Service, exercises for ataxia and caring for someone with ataxia.
- [Ataxia Magazine 205](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-205/)
- [Ataxia Magazine 207](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-207/) - Episodic ataxia type 1 results, International Ataxia Awareness Day, Music therapy and finding the right aid for you.
- [Ataxia Magazine 208](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-208/) - Exciting news on an FA trial, International Ataxia Awareness Day 2019, The Big Give 2019, Children's Ataxia Centre in Sheffield and our new InControl project.
- [Ataxia Magazine 198](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-198/) - Catch up with the latest Ataxia UK news on research, community advice and fundraising this Summer issue for 2017.
- [Ataxia Magazine 199](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-199/) - Delve into issue 199 of the Ataxia Magazine for updates on ataxia awareness, new clinical trials in SCA6 and how to plan a wedding with ataxia.
- [Ataxia Magazine 200](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-200/) - Catch up with the latest on ataxia.
- [Ataxia Magazine 196](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-196/) - Delve into our Winter issue for 2016, including advice on how to get through the winter.
- [Ataxia Magazine 197](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-197/) - Read the Spring issue of 2017!
- [Ataxia Magazine 201](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-201/) - 2018 has begun with a bang! Catch up on the latest ataxia news here.
- [Ataxia Magazine 202](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-202/) - Read about recommended exercises from our Friends; hiring a PA, and changes to how we process your data (GDPR).
- [Ataxia Magazine 203](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-203/) - Find updates on our Derby awareness campaign, a potential treatment for a rare SCA and how to become an Ataxia Ambassador!
- [Ataxia Magazine 206](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-206/) - SCA research, accessible airlines, raising awareness in Farnham and benefits of a gluten-free diet.
- [Gerald Black](https://www.ataxia.org.uk/in-memory/gerald-black/)
- [Mark Eugene Smith](https://www.ataxia.org.uk/in-memory/mark-eugene-smith/)
- [Carol Ann Beckley](https://www.ataxia.org.uk/in-memory/carol-ann-beckley/)
- [Louisa Arnold](https://www.ataxia.org.uk/in-memory/louisa-arnold/)
- [Ataxia Magazine 209](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-209/) - Raising awareness in Scotland, International Ataxia Research Conference 2019, Supporting you around Motability, and the new Ataxia UK ID Card.
- [Ataxia Magazine 210](https://www.ataxia.org.uk/ataxia-magazine/ataxia-magazine-210/) - Fundraising at home, investigating SCA2, our Research Impact Report 2020, stay connected with your community and volunteer with Ataxia UK.
- [Experimental Treatment for Essential Tremor: MRI guided focused ultrasound for the brain](https://www.ataxia.org.uk/research-news/experimental-treatment-for-essential-tremor-mri-guided-focused-ultrasound-for-the-brain/) - An experimental treatment for essential tremor
- [Positive results from Niemann Pick Type C clinical trial](https://www.ataxia.org.uk/research-news/positive-results-from-niemann-pick-type-c-clinical-trial/) - IntraBio announce drug IB1001 improves symptoms of NPC
- [The Mark Dower Trust: Emma Keogh](https://www.ataxia.org.uk/latest-news/the-mark-dower-trust-emma-keogh/) - "This grant has meant everything to me. Exercise has become a huge part of my life, both for my physical and mental wellbeing. I would go as far as saying it has changed my whole attitude to life. After a few years of personal training sessions, I finally built up the confidence to try a
- [Let’s talk about diagnosis… with Marcia](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-marcia/) - After not being believed by many medical professionals, Marcia faced a very difficult time trying to find answers for her symptoms.
- [Let's talk about diagnosis... with Ayesha](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-ayesha/) - Despite Ayesha being diagnosed with SCA7 quite quickly, she lives in Pakistan and tells us that there is no support available.
- [Let’s talk about diagnosis… with Chris](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-chris/) - Chris knew her condition was more than anxiety, and after asking for a second opinion, she was diagnosed with late onset Friedreich's ataxia.
- [Let’s talk about diagnosis… with Karina and Sophie](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-karina-and-sophie/) - Sophie's ataxia diagnosis journey was made incredibly difficult, her mum Karina tells us about it.
- [Let’s talk about diagnosis… with Marc](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-marc/) - For Marc it took one to two years to get an ataxia diagnosis and the process was anything but easy.
- [Let’s talk about diagnosis… with Mhairi](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-mhairi/) - After 27 years of episodes, I Mhairi was finally diagnosed with ataxia; here's her story.
- [Let’s talk about diagnosis… with Phil](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-phil/) - Phil was in the dark about his condition for over two years, then he was eventually diagnosed with ataxia.
- [Let’s talk about diagnosis… with Sarah](https://www.ataxia.org.uk/your-blog/lets-talk-about-diagnosis-with-sarah/) - Sarah's ataxia diagnosis journey was intense and it took almost a decade.
- [Max achieves big, despite his ataxia](https://www.ataxia.org.uk/your-blog/max-achieves-big-despite-his-ataxia/) - Read about Max's journey to his ataxia diagnosis, and his love for media.
- [Ataxia Ambassadors](https://www.ataxia.org.uk/16-30/ataxia-ambassadors/) - The latest information on becoming an Ataxia Ambassador!
- [A Social Worker, a Home-Help and a GP walk into a Service User’s life](https://www.ataxia.org.uk/your-blog/a-social-worker-a-home-help-and-a-gp-walk-into-a-service-users-life/) - Anita Gracey has Friedreich's ataxia and writes poems about how her condition affects her life.
- [Disordered not Drunk: Terry's story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-terrys-story/) - Terry Wigzell is another person from the ataxia community who has faced prejudice from the police and TfL workers. Read his story here.
- [Disordered not Drunk: Dinesh's story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-dineshs-story/) - Here, Dinesh tells us about a time when someone wrongly accused him of being drunk, and the detrimental effect it had afterwards.
- [Disordered not Drunk: James' Story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-james-story/) - James Moore is Emmerdale’s well-loved actor and recently won the Best Newcomer Award 2019. He shares his story of a time when someone didn't believe him about his own health condition.
- [Disordered not Drunk: Joe's Story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-joes-story/) - After a day in the library trying to help his mum, Joe was accused of being drunk and lying. Find out what happened here.
- [Disordered not Drunk: Jason's story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-jasons-story/) - You don't expect to be judged when using public transport, but for people like Jason, this is what happened. Here's what happened when Jason was accused of being drunk due to his ataxia.
- [Disordered not Drunk: Martin's story](https://www.ataxia.org.uk/your-blog/disordered-not-drunk-martins-story/) - Martin has been stopped driving more than once and accused of being drunk. Here he shares his story.
- [FPE Capital Jurassic Coast 100km Walk](https://www.ataxia.org.uk/past-supporter-events/fpe-capital-jurassic-coast-100km-walk/) - Check out this awesome team who tackled the gruelling walk along the Jurassic Coast.
- [Easter office hours](https://www.ataxia.org.uk/ataxia-uk-news/easter-office-hours/) - Closures over the bank holiday weekend.
- [Ataxia UK's Annual Spring Raffle](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-uks-annual-spring-raffle/) - Take part and have the chance to win £200!
- [FDA oprphan drug designation for spinocerebellar ataxia](https://www.ataxia.org.uk/research-news/fda-oprphan-drug-designation-for-spinocerebellar-ataxia/) - Biopharmaceutical company, IntraBio, has received an Orphan Drug Designation from the US Food and Drug Administration (FDA) for its lead compound (IB1000) for the treatment of spinocerebellar ataxias (SCA).
- [GoFAR reinforces partnership with Powell Gene Therapy Center at University of Florida (UF) to develop a gene therapy for Friedreich’s ataxia](https://www.ataxia.org.uk/research-news/gofar-reinforces-partnership-with-powell-gene-therapy-center-at-university-of-florida-uf-to-develop-a-gene-therapy-for-friedreichs-ataxia/) - Researchers at the University of Florida have been granted $450,000 by Italian patient advocacy group GoFAR towards a gene therapy project for Friedreich’s ataxia (FA).
- [Government commits to align as closely as possible with EU rules on clinical trials following Brexit](https://www.ataxia.org.uk/research-news/government-commits-to-align-as-closely-as-possible-with-eu-rules-on-clinical-trials-following-brexit/) - The UK government has committed to ensuring the UK is as closely aligned as possible with the new EU Clinical Trials Regulation (CTR).
- [Raising awareness and understanding of ataxia among healthcare professionals](https://www.ataxia.org.uk/research-news/raising-awareness-and-understanding-of-ataxia-among-healthcare-professionals/) - Ataxia UK attended conferences in Birmingham and St Asaph to and give talks about ataxia to health and social care professionals.
- [Science and research funds from EU programmes guaranteed even in no-deal Brexit scenario](https://www.ataxia.org.uk/research-news/science-and-research-funds-from-eu-programmes-guaranteed-even-in-no-deal-brexit-scenario/) - UK researchers guaranteed funding until the end of 2020 from EU programmes even in the event of a no-deal Brexit.
- [My 12 in 12: James Riddiford](https://www.ataxia.org.uk/your-fundraising-stories/my-12-in-12-james-riddiford/) - James took on the mighty challenge of running 12 marathons over 12 months in aid of supporting people with ataxia. Here is his journey of races across the world.
- [Coping with my condition: Jonathan's Story](https://www.ataxia.org.uk/your-blog/coping-with-my-condition-jonathans-story/) - Read about Jonathan's journey of diagnosis and coping through his passion of music.
- [Post-Christmas gifts](https://www.ataxia.org.uk/ataxia-uk-news/post-christmas-gifts/) - Happy New Year! We hope you had a lovely Christmas. If you had a bad haul, we're asking for unwanted gifts as raffle prizes!
- [Research News - July 2018](https://www.ataxia.org.uk/research-news/research-news-july-2018/)
- [Fashioning his dreams: Joe's Story](https://www.ataxia.org.uk/your-blog/fashioning-his-dreams-joes-story/) - Jordan Jervis has spinocerebellar ataxia type 1. But this hasn’t stopped him pursuing his dream of becoming a clothing designer.
- [Research for designing medication for children with Friedreich’s ataxia](https://www.ataxia.org.uk/ataxia-uk-news/research-for-designing-medication-for-children-with-friedreichs-ataxia/) - A survey aimed at parents of children with FA to help design suitable medication.
- [1 in 17 photography project](https://www.ataxia.org.uk/ataxia-uk-news/1-in-17-photography-project/) - People with ataxia are cordially invited to take part in a photography project, launched on Rare Disease Day 2018, that focuses on the individuals behind rare diseases.
- [Former Lord Mayor of Exeter, Rachel Lyons](https://www.ataxia.org.uk/your-blog/former-lord-mayor-of-exeter-rachel-lyons/) - The Exeter Campaign: Rachel Lyons, Lord Mayor of Exeter 2013-14, was instrumental in helping Ataxia UK and the Exeter Branch to fund an awareness campaign by choosing us as her charity of the year.
- [Being a parent: Nicola's story](https://www.ataxia.org.uk/your-blog/being-a-parent-nicolas-story/) - Nicola writes about her son Jordan, who has Friedreich’s ataxia, and her experiences as a parent of a child with the condition.
- [Crowdfunding for a chair: Will's story](https://www.ataxia.org.uk/your-blog/crowdfunding-for-a-chair-wills-story/) - Will Martin is 27 and was diagnosed with Friedreich’s ataxia whilst at secondary school. Will talks to us about how ataxia has isolated him from his peers, made him deflect from education and shares his crowdfunding goals for a new wheelchair.
- [Driving with ataxia: Austin's Story](https://www.ataxia.org.uk/your-blog/driving-with-ataxia-austins-story/) - Austin Fredericks was diagnosed with SCA in 2011. He's a qualified electrician, has faced prejudice by people who assume he isn’t fit to work, and has even been taken to court for ‘drunk driving' whilst sober.
- [Seeing the world: Nigel's story](https://www.ataxia.org.uk/your-blog/seeing-the-world-nigels-story/) - Nigel Davis was diagnosed with idiopathic spino-cerebellar ataxia (SCA with an unknown cause) at 17. He was able to manage his condition for some time, but after teaching for 19 years, he was forced to retire.
- [Website Improvements](https://www.ataxia.org.uk/ataxia-uk-news/website-improvements/) - Ataxia UK have made improvements to their website - have your say.
- [Ataxia Annual Conference 2017 Announced](https://www.ataxia.org.uk/ataxia-uk-news/ataxia-annual-conference-2017-announced/) - Save the Date! The Ataxia UK Annual Conference will be held at Blu Radisson Blu Hotel on 20 and 21 October, and tickets go on sale on 12 June!
- [Save the Date! Annual Conference 2017](https://www.ataxia.org.uk/ataxia-uk-news/save-the-date-annual-conference-2017/) - Join Ataxia UK for the Annual Conference at the Radisson Blu Hotel, Stansted Airport, on 20 to 21 October!a
- [Simon's Half Marathon](https://www.ataxia.org.uk/your-fundraising-stories/simons-half-marathon/) - Simon's report on his Brighton half-marathon, where he achieved his 5 key-targets while raising funds for Ataxia UK.
- [Orphan Drugs and Rare Disease Europe 2017](https://www.ataxia.org.uk/ataxia-uk-news/orphan-drugs-and-rare-disease-europe-2017/) - SMi is proud to announce the return of their 6th annual Orphan Drugs event to Berlin on the 15th -16th May 2017! The global orphan drug market totaled nearly $123 billion in 2014 and will continue to grow to reach nearly $191 billion by 2019. With such growth and innovation witnessed in this field now
- [SCA-6 & SPG7 Study - Sheffield](https://www.ataxia.org.uk/ataxia-uk-news/sca-6-spg7-study-sheffield/) - On behalf of Sheffield University, we are helping to publicise a study that could help to better understand problems with walking in people with ataxia What is the study? We are assessing the ability of a technique called gait analysis to detect changes over time in the way people with ataxia walk. Who can
- [Statement on EU Referendum Outcome](https://www.ataxia.org.uk/ataxia-uk-news/statement-on-eu-referendum-outcome/) - In response to the UK's vote to leave the European Union, we appreciate there may be some uncertainty in terms of how this affects medical research organisations. As a member of the Association of Medical Research Charities, we echo the word's of Lord Sharkey, Chair of the AMRC, when hes says: "The UK health and medical research community
- [We're Moving](https://www.ataxia.org.uk/ataxia-uk-news/were-moving/) - We’re moving office As a result, the Ataxia UK office will be closed on Thursday 7th, Friday 8th April & Monday 11th April From 12th April 2016, please address correspondence to: Ataxia UK 12 Broadbent Close London N6 5JW Our Phone number will remain the same Apologies for any inconvenience caused
- [Unitalk Demo - 17th March](https://www.ataxia.org.uk/ataxia-uk-news/unitalk-demo-17th-march/) - Unitalk (www.unitalkltd.com) currently market an app to enable easy translation between languages. They are shortly to launch another app to facilitate communication for people with speech difficulties, which they have developed with advice from Headway and The Stroke Association. They are coming to Ataxia UK’s office (Lincoln House, 1 – 3 Brixton Road, London SW9
- [Channel 4 'Year of Disability'](https://www.ataxia.org.uk/ataxia-uk-news/channel-4-year-of-disability/) - Kudos to Channel 4 for making 2016 their ‘Year of Disability’ – good on them for doing something about the appalling lack of representation of disabled people in broadcasting. To coincide with the Channel’s coverage of the Rio Paralympics, Channel 4 have created a £300,000 fund to foster new talent and support the careers of
- [Tina's Hair-Raising Challenge](https://www.ataxia.org.uk/your-fundraising-stories/tinas-hair-raising-challenge/) - Tina Evans, a good friend of Ataxia UK, has undertaken a real hair-raising act of fundraising...Tina, alongside five others decided to shave off her hair in aid of the charity! Together a whopping total of £3,664 was raised! In Tina's words, "A cure would be great, but it doesn't just happen while you sit back and wait.
- [Removing Barriers](https://www.ataxia.org.uk/your-fundraising-stories/removing-barriers/) - Removing Barriers is a light hearted board game which engages users in discussion about the barriers that face disabled people, and suggests ways in which those barriers can be overcome. Disabled people are significantly more likely to experience unfair treatment at work, and in the other scenarios, than non-disabled people. The game aims to provide
- [Five-a-side Fundraising!](https://www.ataxia.org.uk/your-fundraising-stories/five-a-side-fundraising/) - We would like to say a big Ataxia UK thank you to the Ford Engineering Craft and Higher Apprentices, who took part in a Five a Side Football Tournament at Dagenham between nine teams and raised £600.00 for our work! With spectators, over 60 apprentices took part in the charity event! Fantastic stuff! Thank you to
- [What a Site!](https://www.ataxia.org.uk/ataxia-uk-news/what-a-site/) - Welcome to our new website

## Pages

- [Home](https://www.ataxia.org.uk/) - Our Open Letter to the Prime Minister marks the next important milestone in the #AccessOmavNow campaign. Building on the momentum from our Parliamentary Drop-In Event, we are calling on the Government to deliver urgent interim access to omaveloxolone (Omav) for people with Friedreich's ataxia in England and to reform the way rare disease medicines are
- [Virtual Activities](https://www.ataxia.org.uk/support-services/virtual-activities/) - VIRTUAL ACTIVITIES Virtual Activities At Ataxia UK, we wanted to create social activities that help the ataxia community to stay connected with each other from the comfort of your own home. The sessions are created and hosted by the Services team and our wonderful volunteers, including wellbeing activities, information sessions on a range of
- [Wellbeing Week 2027](https://www.ataxia.org.uk/wellbeingweek2027/) - Wellbeing Week 2027 We are excited to announce the return of our annual Wellbeing Week 2027 (1st February - 5th February)! Join us for a week of FREE virtual sessions on Zoom, designed to support your health and wellbeing. Throughout the week, we'll be exploring a range of topics, including mental wellbeing, symptom management, exercise,
- [All About Ataxia](https://www.ataxia.org.uk/ataxia-uk-events/all-about-ataxia/) - All About Ataxia & All About Ataxia PLUS All About Ataxia is an information seminar that gives anyone affected by ataxia (patients, carers/family members) information about the clinical and practical implications of living with ataxia. They explain what is known about ataxia, how it may progress, and what can be done to mitigate its effects.
- [Your Ataxia UK: Treatment & Care For Your Ataxia](https://www.ataxia.org.uk/34201-2/) - The Big Give Christmas Challenge is Ataxia UK’s annual fundraising campaign, running from 1–8 December. This year’s theme, Your Ataxia UK: Treatment and Care for Your Ataxia, focuses on making sure everyone affected by ataxia can access the specialist treatment, care and support they deserve, wherever they live. As ataxia affects everyone differently, care should
- [Speech Therapy](https://www.ataxia.org.uk/support-services/speech-therapy/) - Speech Therapy Speech Therapy For many people with progressive ataxias, speech and communication problems are among the top three most challenging symptoms. Did you know it takes around 100 muscles to speak? These muscles must work in precise coordination. Ataxia disrupts this coordination, often making speech slower, slurred, or harder to understand. This can have
- [Euro-ataxia Annual Conference 2026](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/euro-ataxia-2026/) - Euro-ataxia Annual Conference 2026 Friday 27th November 2026 1-5pm UK time, 2-6pm CET Online: Zoom
- [Branches & Support Groups](https://www.ataxia.org.uk/support-services/branches-support-groups/) - Branches And Support Groups Ataxia UK Branches and Support Groups Our Support Groups and Branches are what truly make Ataxia UK a nationwide charity. Living with a rare condition can feel isolating, and Ataxia UK aims to reduce that feeling by coordinating a network of groups across the UK, where people affected by
- [Ataxia Together Week](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/ataxia-together-week/) - Ataxia Together Week 2026 We thank our sponsors for their support of Ataxia Together Week: Thank you to everyone who took part in Ataxia Together Week 2026, from attending events across the week, to sharing your story. If you missed some of the online events, or want to revisit some of the information, you can
- [Ataxia Together Week Booking Form](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/ataxia-together-week-booking/) - Booking Form 21 - 25 September 2026 How to Book 1. Use the form below to book your Ataxia Together Week ticket. This ticket gives you access to all events across the week, and can be used by as many people in one household as you like. 2. Once you have booked your ticket, you
- [Policy and Influencing work](https://www.ataxia.org.uk/support-services/policy-and-influencing-work/) - OUR POLICY AND INFLUENCING WORK Our Open Letter to the Prime Minister marks the next important milestone in the #AccessOmavNow campaign. Read and sign Ataxia UK's Open Letter to Prime Minister Andy Burnham Building on the momentum from our Parliamentary Drop-In Event, we are calling on the Government to deliver urgent interim access to omaveloxolone
- [Privacy Policy](https://www.ataxia.org.uk/privacy-policy/) - Privacy Policy Privacy Policy Ataxia UK is committed to protecting your privacy. We use the information we collect about you to manage your donations, event participation, process orders and to help you enjoy a more personalised experience. Developing a better understanding of our supporters through their personal data enables us to make informed communications; market
- [Greeting Cards](https://www.ataxia.org.uk/gemmasheengreetingcards/) - Greeting Cards by Gemma Sheen Homemade Greeting Cards by Gemma Sheen Gemma Sheen is an awesome supporter who has previously made Christmas cards for Ataxia UK. She is now expanding her designs to include all kinds of cards, including birthday, wedding and thank you cards. Her beautiful designs are all one of a kind, so
- [Post #33326](https://www.ataxia.org.uk/ataxia-research/taking-part-in-research/current-and-recently-completed-clinical-trials-in-ataxias/) - Current and recently completed clinical trials in ataxias Here you will find a summary of recently published and ongoing trials. This summary is not exhaustive, but illustrates that a number of types of drug trials have been completed, or are currently taking place. There are also many more trials in the pipeline, either to confirm the results of
- [Specialist Ataxia Centres](https://www.ataxia.org.uk/newly-diagnosed/specialist-ataxia-centres/) - OUR SPECIALIST ATAXIA CENTRES Ataxia UK accredited Ataxia Centres Given the rarity of ataxia, accessing suitable treatment and care can be a difficult and long-term process. Ataxia UK is combatting this through their Specialist Ataxia Centres, where specialist neurologists are caring for people with ataxia and conducting first-rate research in the field. About Ataxia UK
- [Board of Trustees](https://www.ataxia.org.uk/board-of-trustees/) - Our Board of Trustees Ataxia UK Board of Trustees Our Board of Trustees is made up of people who are all affected by ataxia, either through having the condition or a close relative with it. They have a wide variety of skills and experience that contribute to the running of Ataxia UK, including people with
- [Vacancies](https://www.ataxia.org.uk/get-involved/vacancies-for-ataxia-uk/) - Vacancies Come work for us Working at Ataxia UK means being part of a team dedicated to improving the lives of people affected by ataxia today, while helping to drive forward the research that could lead to better treatments and cures tomorrow. Every role contributes to making a meaningful difference to individuals and families living
- [Ataxia Magazine](https://www.ataxia.org.uk/support-services/ataxia-magazine/) - Ataxia UK Magazine Welcome to the Ataxia UK Magazine The ataxia magazine is a quarterly publication designed to keep you up to date on all things ataxia. One of the perks of being a Friend of Ataxia UK is having access to the Ataxia Magazine straight off the printing press. You can get the magazine
- [OMAV updates](https://www.ataxia.org.uk/omav-updates/) - Omaveloxolone updates Omaveloxolone or Omav (brand name SKYCLARYS®), is a drug which has received regulatory approval for the treatment of Friedreich's ataxia (FA) in people aged 16 or over in the UK, as well as in the US and EU countries. The approval follows positive results in preclinical, laboratory-based research, and clinical trials. Omav is not currently routinely available on the NHS
- [#ACCESSOMAVNOW](https://www.ataxia.org.uk/accessomavnow/) - Click here to read and download our Open Letter to the Prime Minister Prime Minister, you stood with families affected by Friedreich's ataxia. Now you can turn that support into action. Dear Prime Minister, On behalf of Ataxia UK, and the ataxia community we represent, may I begin by congratulating you on assuming the
- [For People with Friedreich's Ataxia](https://www.ataxia.org.uk/ataxia-research/taking-part-in-research/for-people-with-friedreichs-ataxia/) - For People with Friedreich's Ataxia For People with Friedreich's Ataxia Taking part in research as a patient is a wonderful way to bring us ever closer to finding a cure for ataxia. Below is a list of current research trials and projects that are recruiting for patients with FA. Yanita was diagnosed with FA in
- [For People with Cerebellar Ataxia](https://www.ataxia.org.uk/ataxia-research/taking-part-in-research/for-people-with-cerebellar-ataxia/) - For People with Cerebellar Ataxia For People with Cerebellar Ataxia Taking part in research as participants in trials is a wonderful way to get us ever closer to finding a cure. Listed below are some current research projects recruiting for participants with cerebellar ataxia. CLINICAL TRIALS London Ataxia Centre SCA1 and SCA3 trial (Added February
- [Taking Part In Research](https://www.ataxia.org.uk/ataxia-research/taking-part-in-research/) - Healthcare Research Taking Part In Research Are you a person with ataxia, or interested in ataxia, looking to take part in research? Ataxia UK helps researchers to recruit participants for their trials and projects. Find a list of ongoing research below in which you may be able to take part. It would be impossible for
- [Research Funded by Ataxia UK](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/) - Research Funded By Ataxia UK Research Funded by Ataxia UK Ataxia UK funds a wide variety of research projects. Below is a list of projects currently being funded, and of projects that have ended in the last few years. Friedreich's Ataxia Awarded 2026 Improving speech recognition for people with ataxia - £29,982.76 - Research Project
- [Summary of Liverpool Roadshow](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/liverpool-roadshow-copy/) - Liverpool Roadshow 2026 Sunday 7 June 2026 Delta Hotels by Marriott Liverpool City Centre With thanks to the sponsors of this event Summary of events: Liverpool Roadshow An update from Ataxia UK CEO Sue Millman Ataxia UK CEO Sue Millman provided an update on the charity's work and priorities, sharing what Ataxia UK has been
- [Ataxia UK Conferences](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/) - Upcoming Conferences More info here Past Conferences & Events If you haven't been able to make it to any of our Conferences, please find links below to the main points from each one. 2026 Liverpool Roadshow Read More 2026 Glasgow Roadshow Read More 2026 Basingstoke Roadshow Read More 2024 Roadshow Events Read More 2024 Virtual
- [Summary of Basingstoke Roadshows](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/basingstoke-roadshow-copy/) - Basingstoke Roadshow 2026 Saturday 21 March 2026 Hampshire Court Hotel, Basingstoke With thanks to the sponsors of this event: Summary of Basingstoke Roadshow An update from Ataxia UK CEO Sue Millman Ataxia UK CEO Sue Millman provided an update on the charity's work and priorities, sharing what Ataxia UK had
- [Summary of Glasgow Roadshow](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/glasgow-roadshow-copy/) - Glasgow Roadshow 2026 Saturday 9 May 2026 Village Hotel, Glasgow With thanks to the sponsors of this event Summary of Glasgow Roadshow An update from Ataxia UK CEO Sue Millman Ataxia UK CEO Sue Millman provided an update on the charity's work and priorities, sharing what Ataxia UK has been doing to
- [Ataxia UK Events](https://www.ataxia.org.uk/ataxia-uk-events/) - Ataxia UK Events Ataxia UK Events Ataxia Together Week Join us for a week of connection, learning, advocacy and community... Virtual Activities Regular virtual activities to improve your wellbeing and keep you informed and entertained. Find out more here... All About Ataxia A virtual workshop for people with a new diagnosis of ataxia. Find out
- [Medical Advisory Panel](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/patient-pathways/medical-advisory-panel/) - Medical Advisory Panel Ataxia UK Medical Advisory Panel The Medical Advisory Panel was set up to provide independent advice on the best clinical practice for people with ataxia, and to aid Ataxia UK in specific issues related to the ataxias and developments in treatment and care, among others. The current members of the panel include
- [ID Cards](https://www.ataxia.org.uk/support-services/id-cards/) - Order an Ataxia ID Card Order your Ataxia ID Card Friends of Ataxia UK can request a free Ataxia UK ID card by completing the relevant form below. If you have ataxia, please complete the Living with Ataxia ID card form. If you are a family member, friend or carer of someone with ataxia, please
- [Genetics](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/diagnosis/genetics/) - Genetics Research, Appendix & References Referral to Genetics Services When requesting genetic investigations it is essential to discuss the implications of the test with the patient prior to testing. In view of the potential implications for family members of patients who undergo testing, it is essential that neurologists liaise with their clinical genetics counterparts (as
- [About Ataxia UK](https://www.ataxia.org.uk/about-ataxia-uk/) - About Ataxia UK Welcome to Ataxia UK. We are the leading national charity in the UK for people affected by any type of ataxia. We fund research into finding treatments and cures, and offer advice, information and support to people affected by the condition. Our vision Is a world free of ataxia Our mission Is
- [Ataxia Centres & Specialists](https://www.ataxia.org.uk/healthcare-professionals/ataxia-centres-specialists/) - Ataxia Centres Ataxia Centres and Specialists Find out how to refer a patient to one of our Ataxia Centres, or to clinicians/neurologists who have an interest in ataxia Ataxia UK accredited Ataxia Centres As the ataxias are relatively rare conditions, often with complex needs, patients are commonly referred to Specialist Ataxia Centres. Ataxia UK has
- [About Ataxia Research](https://www.ataxia.org.uk/ataxia-research/about-ataxia-research/) - ATAxia uk's involvement in research Ataxia UK's involvement in research Ataxia UK is a medical research charity with a clear objective: to provide funds and support to ataxia research with the goal of developing treatments and cures for the ataxias. Since 2000 we have invested over £6.75m in research. Watch our video outlining the research
- [Research Grants](https://www.ataxia.org.uk/ataxia-research/research-grants/) - Research Grants Apply For A Grant Ataxia UK provides funding for innovative and relevant research on the ataxias. Read below to discover more about the application process. A list of current and recently funded projects can be seen here. Ataxia UK have also passed the 2025 peer review audit by the Association of Medical Research
- [Types of Ataxia](https://www.ataxia.org.uk/about-ataxia-uk/types-of-ataxia/) - types of ataxia Types of Ataxia Ataxia is an umbrella term for a group of neurological disorders that affect balance, coordination and speech. Some types of ataxia such as Friedreich's ataxia and the spinocerebellar ataxias are inherited, meaning they are caused by genes passed on by parents to their children. When ataxia is not inherited
- [London](https://www.ataxia.org.uk/newly-diagnosed/specialist-ataxia-centres/london/) - London Specialist Centre London Ataxia UK accredited Specialist Ataxia Centres are centres of excellence, where people with ataxia receive the best possible quality of care and a co-ordinated service combining diagnosis, treatment, support and research. They have been set up in direct response to needs identified by people affected by ataxia, as well as clinicians
- [Sheffield Children's Centre](https://www.ataxia.org.uk/newly-diagnosed/specialist-ataxia-centres/sheffield-childrens-centre/) - Sheffield Children's Centre Sheffield Children's Centre Ataxia UK accredited Specialist Ataxia Centres are centres of excellence, where people with ataxia receive the best possible quality of care and a co-ordinated service combining diagnosis, treatment, support and research. They have been set up in direct response to needs identified by people affected by ataxia, as well
- [Oxford Adults' & Children's Ataxia Centre](https://www.ataxia.org.uk/newly-diagnosed/specialist-ataxia-centres/oxford-childrens-adults-centre/) - OXFORD ADULT'S & Children's Centre Ataxia UK accredited Specialist Ataxia Centres are centres of excellence, where people with ataxia receive the best possible quality of care and a co-ordinated service combining diagnosis, treatment, support and research. They have been set up in direct response to needs identified by people affected by ataxia, as well as
- [Sheffield](https://www.ataxia.org.uk/newly-diagnosed/specialist-ataxia-centres/sheffield/) - Sheffield Specialist Centre Sheffield Ataxia UK accredited Ataxia Centres are centres of excellence, where people with ataxia receive the best possible quality of care and a co-ordinated service combining diagnosis, treatment, support and research. They have been set up in direct response to needs identified by people affected by ataxia, as well as clinicians with
- [Voice Banking](https://www.ataxia.org.uk/support-services/voice-banking/) - Voice Banking Voice Banking with Thanks to the generosity of our supporters, Ataxia UK has been able to run the speech therapy course and provide funded voice banking with SpeakUnique since 2022. These services have already made a real difference to people living with ataxia-helping them preserve their voices, practise new skills, and regain
- [South West Specialist Ataxia Nurse](https://www.ataxia.org.uk/support-services/sw-specialist-nurse/) - South West Specialist Ataxia Nurse What can the Specialist Ataxia Nurse do for you? Provide information and support about ataxia for you, your family, carers and friends. Advise on recognition and management of symptoms like mobility, speech, swallowing, bladder and bowel changes, sleep, sexual function and diet. Provide emotional and psychological support. Offer one-to-one consultations
- [Christmas Santa Dash!](https://www.ataxia.org.uk/santadash/) - Christmas Santa Dash! Take part in various Santa Dash events! A Santa Dash is a fun and silly way to get into the festive spirit and fundraise for Ataxia UK! Santa in the City Walk & Run! Santa in the City, participants can choose to take part in the traditional festive fun walk or run!!
- [London Landmarks Half Marathon 2025](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/llhm-2026/) - Please email us for a form now at fundraising@ataxia.org.uk Subscribe To Our Newsletter Latest news & blogs Shoes by Clare Sheeran Research Impact Report 2026 Why me? An update on genetic testing in ataxia Drug Repurposing to Accelerate Therapeutic Development for ITPR1-Associated Cerebellar Ataxias More news Let's stay in touch Subscribe to our monthly eNews
- [London Marathon 2026](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/london-marathon-2024/) - London Marathon 2027 #TeamAtaxiaUK! Get in touch now to join our team at the 2027 London Marathon! LIMITED SPACES. Please register now to avoid disappointment! Email us at fundraising@ataxia.org.uk We are requesting anyone interested in running the Marathon to enter the ballot for a chance to get a place! We will cover part the cost
- [Runs](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/) - Marathons and Runs Great North Run 2026 WE HAVE ONLY 2 PLACES LEFT - HURRY - DEADLINE IN 3 DAYS! at fundraising@ataxia.org.uk London Marathon, April 2027 RUNNERS NEEDED! Contact fundraising@ataxia.org.uk for a spot in 2027! The London Big Half ONLY HAVE 5 PLACES LEFT! Contact us NOW at fundraising@ataxia.org.uk! London Landmarks Half Marathon 2027 WE
- [Great North Run 2025](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/great-north-run-2025/) - Great North Run 2026 WE HAVE ONLY 2 PLACES LEFT - HURRY - DEADLINE IN 3 DAYS! Great North Run, September 2026 Starting in the heart of Newcastle, you'll run the city and out to South Shields along the coast as you cross over the famous Tyne Bridge and past Gateshead International Stadium towards that unforgettable finish line feeling and post-race fish and chips!
- [Treatment and Care](https://www.ataxia.org.uk/treatment-and-care/) - Treatment and Care Treatment and Care Although there is currently no cure for ataxia, there are a number of treatments available to help with the symptoms people experience. Medications are available, for example; for muscle spasms, tremors, bladder problems, abnormal eye movements and depression. Cardiac problems seen in Friedreich's ataxia are also treatable. Certain types
- [For Researchers](https://www.ataxia.org.uk/ataxia-research/for-researchers/) - For Researchers Ataxia UK aims to support ataxia researchers in a variety of ways. We provide funding, help to recruit participants with ataxia to studies, facilitate research and provide resources and information about ataxia research developments. We can also provide advice, and act as a link between researchers and people with ataxia. We host and
- [Let's Hear From Some Volunteers](https://www.ataxia.org.uk/get-involved/volunteer-for-ataxia-uk/lets-hear-from-some-volunteers/) - Let's hear from some volunteers Let's hear from some volunteers Derek Wood - Coordinator of Farnham Support Group and Ataxia Centre Volunteer "I was diagnosed with Late-Onset Idiopathic Spino-Cerebellar Ataxia in 2009 and after attending South Downs branch meetings for a while, I was invited to an exploratory meeting in Farnham. Long story short, I
- [Our Omav Campaign](https://www.ataxia.org.uk/our-omav-campaign/) - Our Omav Campaign New Year update; December 2025: On December 10, an Ataxia UK delegation led by its Chief Executive, Sue Millman, along with Jonathan Brash MP met with Dr Zubair Ahmed MP, Parliamentary Under Secretary of State for Health Innovation and Safety, and other officials from the Department of Health and Social Care (DHSC)
- [Events And Fundraising](https://www.ataxia.org.uk/get-involved/events-and-fundraising/) - Events and Fundraising Please click through the links below to find some great ideas on how you can get involved and fundraise. Our Challenges Read More Plan An Event Read More Fundraising Stories & Inspiration Read More Fundraising Inspiration Read More Past Fundraising Events Read More Subscribe To Our Newsletter Latest news & blogs Research
- [Your Fundraising Stories](https://www.ataxia.org.uk/get-involved/your-fundraising-stories/) - Your Fundraising Stories Your Fundraising Stories 365 days of shorts As you enter the winter period, spare a thought for (the most-likely very chilly) David Arnold! David, the heart-warmingly devoted uncle, has worn a pair of shorts every single day ... Read More → The EPIC 3-day Cycle After Richard Bradford organised and completed his
- [Your Fundraising Stories](https://www.ataxia.org.uk/get-involved/events-and-fundraising/your-fundraising-stories/) - Fundraising Stories & Inspiration. Below you will find some inspirational stories Get Inspired by Ataxia UK's Past Fundraisers! From an online art exhibition and inventive raffles, to cooking and dancefit classes, have a look below at past fundraisers Ataxia UK and our supporters have hosted. Would you like to do something similar, or speak to
- [Current Volunteering Roles](https://www.ataxia.org.uk/get-involved/volunteer-for-ataxia-uk/current-volunteering-roles/) - Current Volunteering Roles Support Group Leader Branches and Support Groups are a great way to meet other people with ataxia in your local community, socialise and provide support. Currently some of our Branch and Support Groups are in need of leaders. This role is not only a great addition to your CV but makes a real
- [Christmas with Ataxia UK!](https://www.ataxia.org.uk/christmas-with-ataxia-uk/) - COMING SOON
- [Challenges and Community Fundraising](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/) - Choose your challenge Choose your challenge to support Ataxia UK! Skydives, Abseils, Wing Walks & Bungee Read More Half Marathons, Marathons and Runs Read More Walks and Distance Treks Read More Christmas Fundraisers for Ataxia UK Read More A-Z Fundraising Ideas Read More Team & Obstacle Events Read More Community Fundraising Read More Cycling Challenges
- [Past Fundraising Events](https://www.ataxia.org.uk/get-involved/past-fundraising-events/) - Past Fundraising Events London Marathon 2026 London Marathon 2026 was a huge success and we are so thankful to our fundraisers this year! Sky Dive 2026 Sky Dive 2026 was a huge success and we are so thankful to our fundraisers this year! LLHM 2026 London Landmarks is a one-of-a-kind event and our participants did
- [London Marathon 2023](https://www.ataxia.org.uk/get-involved/london-marathon-2023/) - London Marathon 2026 This page was built as a legacy of the success of the 2026 London Marathon. Our runners raced through the streets of London and took on the marathon with determination, never failing to give the Ataxia UK team wave as they passed us. The Team This year we had 17 participants as
- [Liverpool Roadshow](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/liverpool-roadshow/) - Liverpool Roadshow 2026 Sunday 7 June 2026 Delta Hotels by Marriott Liverpool City Centre With thanks to the sponsors of this event We're pleased to invite you to a one-day Ataxia UK Roadshow in Liverpool! The event aims to provide you with the information and tools to develop your understanding of ataxia, and to feel
- [Planning for the Future](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/planning-for-the-future/) - Planning for the future Planning ahead can feel like a big topic, but it doesn't have to mean making lots of decisions all at once. This page brings together some practical information and starting points to help you think about what matters to you, what support might be helpful, and what steps you may want
- [May-Appeal](https://www.ataxia.org.uk/may-appeal/) - Can you invest in research & help provide a voice? Many people with ataxia experience difficulties with speech, which can make everyday communication challenging. Our Friend, David was diagnosed with SCA6 in 2014. Though he understood that speech problems were a common symptom of ataxia progression, thankfully, his progression was slow. You can help
- [Volunteers Week 2026](https://www.ataxia.org.uk/volunteers-week-2026/) - Join us 1st-7th June as we celebrate our volunteers and their great contribution to the ataxia community! In this week, we will hosting a range of FREE Virtual Activities, please see below for more details. Tuesday June 2nd, 11am-12pm - FREE Chair Pilates Chair Pilates with Sonia Forde Please Book Here This event is limited
- [Liverpool Roadshow 2026 Booking Form](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/liverpool-booking-form/) - Liverpool Roadshow 2026 You can find out more information about this event here. If you have any queries or issues with this booking form, please call us at 020 7582 1444 or email conference@ataxia.org.uk.
- [Brain Donation](https://www.ataxia.org.uk/ataxia-research/taking-part-in-research/brain-donation/) - Brain Donation Brain Donation Ataxia UK is occasionally asked about brain donations for research purposes once an individual with ataxia has passed away. Studies using donated samples of the brain and spinal cord are important in furthering researchers understanding of ataxia, and it also helps them to develop treatments. The UK Brain Banks Network supplies
- [Glasgow Roadshow](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/glasgow-roadshow/) - Glasgow Roadshow 2026 Saturday 9 May 2026 Village Hotel, Glasgow With thanks to the sponsors of this event Bookings for this event are now closed. To be added to the waiting list, please email us at conference@ataxia.org.uk We're pleased to invite you to a one-day Ataxia UK Roadshow in Glasgow! The event
- [For People with Ataxia of Unknown Cause](https://www.ataxia.org.uk/ataxia-research/taking-part-in-research/for-people-with-ataxia-of-unknown-cause/) - For People with ataxia of Unknown Cause For People with Ataxia of Unknown Cause IN-PERSON STUDIES/ PROJECTS: General information about genetic tests available to diagnose ataxia can be found here. Genetic testing has improved significantly in recent years. If you were tested several years ago, it could be a good idea to get tested again,
- [Glasgow Roadshow 2026 Booking Form](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/glasgow-booking-form/) - Glasgow Roadshow 2026 You can find out more information about this event here. If you have any queries or issues with this booking form, please call us at 020 7582 1444 or email conference@ataxia.org.uk.
- [Glasgow Roadshow 2026 Booking Form Complimentary Tickets](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/glasgow-booking-form-comp/) - Glasgow Roadshow 2026 You can find out more information about this event here. If you have any queries or issues with this booking form, please call us at 020 7582 1444 or email conference@ataxia.org.uk.
- [How Is Ataxia Diagnosed?](https://www.ataxia.org.uk/newly-diagnosed/how-is-ataxia-diagnosed/) - HOW IS ATAXIA DIAGNOSED? How Is Ataxia Diagnosed? It is sometimes difficult to get a diagnosis of the specific type of ataxia, as there are many different conditions that can seem very similar. A neurologist may need to do extensive tests to find out exactly what a patient has and this can take time. Investigations
- [Helpline](https://www.ataxia.org.uk/support-services/helpline/) - The Ataxia UK Helpline is here to help! Ataxia UK wants to ensure everyone affected by ataxia has access to the information, advice and support they need to live their best life. Knowing what to do next after a diagnosis or wondering how to support a loved one can be a bit intimidating; the Ataxia
- [London to Brighton 2026 Cycle](https://www.ataxia.org.uk/london2brighton-2024/) - London to Brighton Cycle! Join Team Ataxia UK in the London to Brighton Cycle Ride on 13th September 2026 Join us for the London to Brighton Cycle Ride and pedal with purpose as we ride to find a cure for ataxia - your effort can drive the breakthrough we need! Pedal for a cure this
- [Winter Wonderwheels 2026!](https://www.ataxia.org.uk/winter-wonderwheels/) - Winter Wonderwheels 2026! Winter Wonderwheels is back on the 6th December 2026! This is sure to be a super fun event and a chance to get festive and fundraise for Ataxia UK! Winter Wonderwheels is Back on 1 December 2026! Get ready to kick off this festive season in style while supporting Ataxia UK! This
- [London to Brighton Challenge 2026](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/treks/london-to-brighton-challenge-2022/) - London to Brighton Challenge 2026 23-24 May, 2026 Choose your distance: 25 km, 50 km, 75 km, or 100 km. Walk, jog, or run-solo or as part of a team. The challenge starts at Richmond upon Thames. Now in its 10th year over 2,000 adventurers will take on the Capital to Coast route and test
- [Jurassic Coast Challenge 2026](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/treks/jurassiccoast/) - Jurassic Coast Challenge 2026 16-17 May 2026 Take on the 100, 75, 50, 25 KM or the Marathon + 10K - Walk, Jog, or Run the Jurassic Coast Challenge as a Team or an Individual… for Team Ataxia UK! Embark on an unforgettable adventure along Dorset's World Heritage coastline, starting at Corfe Castle, winding through
- [Swim Serpentine](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/swimming/swim-serpentine/) - SWIM SERPENTINE 2026 Take your passion for swimming and fundraise for Ataxia UK! Swim Serpentine, [September 19 2026], is set in the beautiful Serpentine Lake in Hyde Park and has something for everyone! There are a range of distances 1/2 mile | 1 mile | 2 mile and the super 6! Ages Anyone from ages
- [Cycle](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/cycle/) - Cycle Cycle Calling all cyclists! Become a part of #TeamAtaxiaUK and one of our exciting challenges today. We have cycles within the UK and international challenges, for those looking for an overseas adventure. As well a distances to suit all abilities. For those of you who want to go one step further and cycle abroad
- [At Home Superheroes](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/at-home-superheroes/) - SUPERHERO TRI 2026 Be a Superhero on Team Ataxia UK! On 15 August 2026 run, walk, wheel, cycle, swim, skate and more towards your mission and raise money for Ataxia UK! You can take part at home or join with many other superheroes at Dorney Lake this summer! You can fly solo or unite with
- [Peak District Challenge](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/treks/peakdistrict-challenge/) - Peak District Challenge Peak District Challenge 18th-19th September 2026! Are you a walker, jogger, or runner looking for an awesome challange in the Peak District? Then it's time to take on the Peak District challenge! With the Base Camp in Bakewell you are sure to have a sweet time. When you sign up you will
- [Carers Week 2026](https://www.ataxia.org.uk/carers-week-2026/) - "Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK." Carers Week (8th-14th June) Join us this Carers Week (8th-14th June) for a week of FREE virtual activities as we celebrate and give thanks to
- [Online Support & Forums](https://www.ataxia.org.uk/support-services/online-support-forums/) - Online Support and Forums Ataxia UK Online Support & Forums Ataxia UK Runs a variety of online support networks, and is creating more all the time. You can read about our online channels below and see how to join our networks. Online Support Groups Many of our Branches and Support Groups have been running their
- [Basingstoke Roadshows](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/basingstoke-roadshow/) - Basingstoke Roadshow 2026 Saturday 21 March 2026 Hampshire Court Hotel, Basingstoke With thanks to the sponsors of this event: This event is now sold out. To be added to the waitlist, please email us at conference@ataxia.org.uk. We're also planning further Roadshows in Liverpool and Glasgow in Summer 2026, so keep
- [Researchfish](https://www.ataxia.org.uk/ataxia-research/research-grants/researchfish/) - Researchfish Researchfish Charities that fund medical research need to show that the research they fund has an impact for people with the condition. Researchfish is a way that Ataxia UK does this. As a member of the Association of Medical Research charities (AMRC), Ataxia UK is using Researchfish, an online system for collecting information on outputs, outcomes
- [Ataxia UK Research Grants Privacy Policy](https://www.ataxia.org.uk/ataxia-research/research-grants/ataxia-uk-research-grants-privacy-policy-2/) - Research Grant Privacy Policy Ataxia UK's Research Grant Privacy Policy Effective Date: 17 March 2026 Purpose of this Privacy Policy Ataxia UK is committed to protecting your privacy. This policy explains how Ataxia UK collects, uses, and protects personal data in connection with research grant applications and grant-funded research projects. If you have any requests
- [Basingstoke Roadshow 2026 Booking Form](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/basingstoke-booking-form/) - Basingstoke Roadshow 2026 You can find out more information about this event here. If you have any queries or issues with this booking form, please call us at 020 7582 1444 or email conference@ataxia.org.uk.
- [Mark Dower Trust](https://www.ataxia.org.uk/support-services/grants/mark-dower-trust/) - Mark Dower Trust The Mark Dower Trust The Mark Dower Trust is a financial grant that aims to support young people with ataxia who are seeking independence, through further studies, employment, specialist equipment or hobbies/ skills. Applications OPEN: Sunday the 1st of March 2026 Applications CLOSE: Friday the 1st of May 2026 About Mark Dower
- [Resources](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/resources-and-information-copy-2/) - Policy and Advocacy Resources Click on the type of resource below to find Ataxia UK's publications, leaflets and guides on the information you need. All of these publications are available in print to request from the office (office@ataxia.org.uk); however to save on costs and our impact on the environment, we've made them available to download
- [Wing Walks](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/abseils-skydives-bungee/wingwalks/) - wing walks 2026 Walk amongst the clouds with a Wing Walk Have you ever felt the urge to be strapped to an airplane and soar through the skies at a significant height, sign up for a Wing Walk today! The Wing Walk Company has one main location in Kent and several satellite airfields around the
- [Great North Swim](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/treks/great-north-swim/) - Great North Swim 12-14 June 2026 It's a new year with fresh goals! So why not set a challenge… to kick-start your swimming, to earn an epic medal, to be part of something special, to dive into nature! The Great North Swim, 12-14 June 2026 has something for everyone, for all ages and all abilities,
- [London to Paris 2024 Cycle](https://www.ataxia.org.uk/london2paris-2024/) - London to paris cycle! Take part in the London to Paris Cycle 22-26 July 2026 If you are an avid cyclist and love to travel-then this should be your next big adventure! The London to Paris Cycle is commencing from the 22-26 July and you can book your tickets now. Starting in London you will
- [Thames Path Challenge](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/treks/thamespath/) - Ultra Challenge Series Thames Path Challenge 14th-15th September 2026! Are you a walker, jogger, or runner looking for an exciting adventure near London? Then travel the length on the Thames with this epic challenge! When you sign up you will receive, free food, a medal, medical support, t-shirt and a glass of fizz from the
- [Abseils - Skydives - Bungee](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/abseils-skydives-bungee/) - Abseils and Skydives Throwing yourself out of or off of things to raise money! Sky Diving Raise funds by soaring through the sky! Click here Wing Walk Take to the skies and wing walk for Ataxia UK! Click here Abseils Thrill-seekers click here! Bungees Thrill-seekers click here! Subscribe To Our Newsletter Latest news & blogs
- [Skydiving](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/abseils-skydives-bungee/skydiving/) - Skydiving Sail Through the Skies with a Skydive! Sky Dive Action Day 28 March 2026 Join the national "Ataxia UK Sky Dive Action Day" scheduled for 28 March 2026 and join others across the UK to jump for a cure! Be part of something special! To register for the special "Action Day" and for more
- [Treatment and Care](https://www.ataxia.org.uk/newly-diagnosed/treatment-and-care/) - Treatment And Care Treatment and Care Although there is currently no cure for ataxia, there are a number of treatments available to help with the symptoms people experience. Medications are available, for example; for muscle spasms, tremors, bladder problems, abnormal eye movements and depression. Cardiac problems seen in Friedreich's ataxia are also treatable. Certain types
- [Ataxia Specialists and Neurologists with an interest in ataxia](https://www.ataxia.org.uk/newly-diagnosed/treatment-and-care/ataxia-specialists-and-neurologists-with-an-interest-in-ataxia/) - Ataxia Specialists and Neurologists with an interest in ataxia in the UK Please see below for a list of clinicians at Ataxia UK Accredited Ataxia Centres of Excellence which are centres with expertise in the care of people with ataxia and ataxia research. If attending one of these centres is not a feasible option for you, we have created a list of neurologists with an interest in ataxias to help signpost
- [Leave A Legacy](https://www.ataxia.org.uk/get-involved/leave-a-legacy/) - Leave a Legacy Leave a gift in your Will Forward thinking today can help Ataxia UK find effective treatments and a cure through world-class research tomorrow. Until a cure is found, Ataxia UK is committed to supporting people who are living with ataxia, their family, friends and carers. We understand your loved ones come first,
- [Donate To Ataxia Research](https://www.ataxia.org.uk/donate-to-ataxia-research/) - Donate to Ataxia Research Make a donation to ataxia research If you would like your donation to be restricted to scientific research into the ataxia's ONLY then please use this donation form. Please note that if Ataxia UK receive more funds than needed for a specific research project, we will use our discretion to put
- [Philanthropy at Ataxia UK](https://www.ataxia.org.uk/philanthropy-at-ataxia-uk/) - Visionary individuals who are able to give transformational gifts make our work possible. Register interest here to join this exclusive circle of supporters.
- [2024 Conference Roadshow Booking](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/2024-conference-roadshow-booking/) - Find out more about the South West Specialist Ataxia Nurse event and book your tickets here.
- [Ataxia UK Policy and Influencing work](https://www.ataxia.org.uk/ataxia-uk-policy-and-influencing-work/)
- [Donate To Us](https://www.ataxia.org.uk/donate-to-us/) - Give a Gift to the Ataxia Community If you would like to generously gift a donation to Ataxia UK, please use the form below.Donations are used where the need is greatest. However, if you would prefer to donate specifically to scientific research, please visit our 'Donate to Ataxia Research' page. Please note: Gift Aid is
- [Annual Reports](https://www.ataxia.org.uk/annual-reports/) - Annual Reports Annual Reports, policies and procedures In this section you will find a list of the Ataxia UK Annual Reports and Financial Statements. Annual Report and Financial Statement of 2024-25 Annual Report & Financial Statement of 2023-2024 Annual Report & Financial Statement of 2022-2023 Annual Report &
- [Give As You Shop](https://www.ataxia.org.uk/get-involved/other-ways-to-give/give-as-you-shop/) - Give As You Shop Give As You Shop support Ataxia UK just by shopping! There are a number of different ways you can support Ataxia UK, whether you're an eBay seller, online shopper, or just fancy something from our very own merchandise shop! Click below to read through all the ways you can shop from
- [Palliative Care](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/palliative-care/) - Palliative Care Palliative Care This section addresses issues arising for individuals with progressive ataxia and their carers as a result of the currently incurable nature of these conditions. Little information is available in the literature on palliative or end-of-life care in the ataxias, so in the absence of this the guidance in this section is
- [London Children's Centre](https://www.ataxia.org.uk/newly-diagnosed/specialist-ataxia-centres/london-childrens-centre/) - London Children's Centre The Paediatric Ataxia Clinic is the new service at the National Hospital for Neurology and Neurosurgery (NHNN) Ataxia Centre. The London Ataxia Centre at NHNN was launched by Professor Paola Giunti in 2005, and was accredited as the first centre of excellence by the patient organisation Ataxia UK. The Paediatric Ataxia Clinic
- [Newly Diagnosed](https://www.ataxia.org.uk/newly-diagnosed/) - NEWLY DIAGNOSED WHAT HAPPENS NOW? How Is Ataxia Diagnosed? It is sometimes difficult to get a diagnosis of the specific type of ataxia, as there are many different conditions that can seem very similar. Find out what investigations can be carried out here. About Ataxia ataxia disrupts the communication between the brain and the body;
- [Join Us Thank You](https://www.ataxia.org.uk/join-us-thank-you/) - THANK FOR YOU FOR BEING OUR FRIEND Thank you for completing the Join Us form. Now we have your form, our helpline team will start pulling together your welcome pack and you should recieve this shortly. In the meantime, if you need anything please do email or call us (you can find the numbers and
- [Chance2Win](https://www.ataxia.org.uk/chance2win/) - Chance to Win Play the Chance2Win raffle today and from just £2 a month you could WIN UP TO £500 and help support research into finding treatments and cures for ataxia while helping to provide support until cures are found. Playing the Ataxia UK Chance2Win raffle is an easy and wonderful way for you to
- [2023 Annual Conference](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/2023-annual-conference/) - We're bringing back this year's annual conference in person & online Find out more We are delighted to bring you the Annual Conference 2023, which for the first time ever will be a combination of in-person and online! It will take place at the Radisson Blu, East Midlands Airport on Friday 20th and Saturday 21st
- [The Big Give Christmas Challenge 2025 From Lab to Treatment thank you page](https://www.ataxia.org.uk/tbg25-thank-you/) - THE BIG GIVE CAMPAIGN HAS ENDED. This year's BIG GIVE has just finished and you have created history by scoring the highest ever campaign total. More that £82,000 was raised because you chose to stand with the ataxia community when it mattered the most. The BIG GIVE challenge has been completed but your compassion will
- [Virtual Annual Conference 2025](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/ataxia-uk-virtual-conference-2025/) - Virtual Annual Conference 2025 Friday 3 & Saturday 4 October 2025 Online Sponsored by: Thank you to everyone that attended the 2025 Virtual Annual Conference. If you didn't manage to catch it, or want to revisit some of the information, you can find links to recordings and presentations from the sessions below. Visit our
- [Financial Advice](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/financial-advice/) - Financial Advice Financial Advice & Information Join Liz Edwards (she/her) as she guides carers and anyone supporting people with long-term health conditions or disabilities through the often-confusing world of disability benefits. Learn about: Personal Independence Payment (PIP) and Adult Disability Payment in Scotland Attendance Allowance and Child Disability Payments How eligibility works and common misconceptions
- [Ataxia Research](https://www.ataxia.org.uk/ataxia-research/) - Ataxia Research Ataxia UK is a medical research charity with a clear objective: to provide funds and support to ataxia research with the goals of developing treatments and cures for the ataxias. About Ataxia Research Read More Research News Read More Taking Part In Research Read More For Researchers Read More Our Collaborations Read More
- [Ataxia UK Sky Dive Action Day 2025](https://www.ataxia.org.uk/sky-dive-action-day-2026/) - Skydiving Sail Through the Skies with a Skydive! You can book this once in a lifetime challenge - jump over 10,000 ft - and raise crucial funds for supporting people with ataxia and funding medical research. Imagine standing at the edge of an open doorway in an aircraft flying at 10,000 feet. The noise of
- [The Great Scottish Run](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/great-scottish-run/) - The Great SCOTTISH Run The Great Sottish Run, 4 October 2026 Join us for an unforgettable experience in Scotland's friendliest city! With a city centre start and finish, the AJ Bell Great Scottish Run is a true celebration of Glasgow's unique character. This event showcases inspiring urban architecture, lush green spaces, rich history, and vibrant
- [Employment Rights](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/employment-rights/) - Employment Rights Employment Many people of all ages and career paths continue to work after being diagnosed with ataxia. Symptoms of ataxia can make working in many environments difficult, however it is important to remember that people with all types of disabilities share the same rights as other job-seekers and employees. Therefore it is important
- [Ataxia UK Annual Virtual Conference 2025 Ticket Booking](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/ataxia-uk-virtual-conference-2025-booking/) - Virtual Annual Conference 2025 Join us online, from the comfort of your home, on Friday 3 and Saturday 4 October for the Ataxia UK Virtual Annual Conference - book your tickets below. If you have any queries, please contact us at conference@ataxia.org.uk.
- [Big Ataxia Cake Bake](https://www.ataxia.org.uk/big-ataxia-cake-bake-2025/) - Big Ataxia Cake Bake! The Big Ataxia UK Cake Bake 2025 1 November to 31 December* Get Your Bake On for Ataxia UK! The Big Ataxia UK Cake Bake is just around the corner, and we can't wait to see what delicious creations you'll whip up this year! This is your opportunity to get creative,
- [Parallel Windsor](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/parallel-windsor/) - Parallel Windsor The Parallel Windsor - 5 July 2026 - 10am-4pm The Parallel Windsor is an opportunity for everyone to shine, as a fully accessible and inclusive festival of events, for all ages and abilities! Join #TeamAtaxiaUK for one of their many events, including a 10km, 5km, 1km, Suprasensory 1km or 100m challenge. The Festival
- [Join Our Medical Registry](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/join-our-medical-registry/) - Medical Registry Join Our Medical Registry Staying Up To Date Join our Medical Professionals Registry to stay in touch with us, and access the most up-to-date advice and information. You can sign up by completeing the short form at the bottom of this page Keep an eye on our Ataxia Training Days page to read
- [The London Big Half 2026](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/the-london-big-half-2026/) - The London Big Half 2026 #TeamAtaxiaUK! s Get in touch now to join our team at the 2026 London Big Half! LIMITED SPACES. Please register NOW to avoid disappointment! Email us at fundraising@ataxia.org.uk Join the team at the London Big Half on 6 September 2026! We will cover part the cost of your place, you
- [Manchester Marathon](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/manchester-marathon/) - MANCHESTER MARATHON 2026 The Manchester Marathon, 6 April 2025 Run the Iconic Manchester Marathon 2025! Join the 2025 Manchester Marathon on April 6th, featuring a flat, fast course through the city. Known for its vibrant atmosphere and enthusiastic support, it's perfect for first-timers and seasoned runners. Sign up now and be part of this iconic
- [Research Conferences](https://www.ataxia.org.uk/ataxia-research/research-conferences/) - Research Conferences Ataxia UK Research Conferences Here you can read all about the ataxia research conferences that our Research team attend and help to organise. Past Conferences The International Congress for Ataxia Research (ICAR) 2024 The International Congress for Ataxia Research (ICAR) 2024 took place in London from 12th - 15th November. It was organised
- [Ataxia UK Annual Virtual Conference 2024 Ticket Booking](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/ataxia-uk-virtual-conference-2024-booking/) - Virtual Annual Conference 2024 Join us online, from the comfort of your home, on Friday 27th and Saturday 28th September for the Ataxia UK Virtual Annual Conference - book your tickets below. If you have any queries in the meantime, please contact Anastasia at conference@ataxia.org.uk
- [Ataxia UK Annual Virtual Conference 2024](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/ataxia-uk-virtual-conference-2024/) - Virtual Annual Conference 2024 This year's Virtual Annual Conference took place on Friday 27th and Saturday 28th September and we were joined by over 100 Friends of Ataxia UK for a jam-packed programme. If you missed out on the Conference, don't worry we've got recordings and presentation decks for you below. Find out more Friday
- [Trustee Vacancies](https://www.ataxia.org.uk/trustee-vacancies/) - Have you the vision, commitment and experience to be a Trustee of Ataxia UK? The Trustee Board governs and sets the strategic direction of Ataxia UK. The Board is made of up Friends of Ataxia UK; seven are elected by Friends of Ataxia UK and three are appointed by the Board. We recruit new Trustees
- [Connor](https://www.ataxia.org.uk/connor/)
- [International Ataxia Awareness Day 2023 campaign](https://www.ataxia.org.uk/iaad2023/) - No one should go undiagnosed. You can help end slow ataxia diagnosis by walking a copy of the Ataxia UK medical guidelines to your local GP surgery this autumn. You can also take part virtually by covering the distance to your nearest GP at home and emailing them a copy of the guidelines. Alternatively, you
- [London Clinic Feedback Page](https://www.ataxia.org.uk/london-clinic-feedback-page/) - Ataxia UK London Clinic feedback We'd love to hear how your experience at the london clinic went Please note that the London Ataxia Clinic Patient Feedback Form has recently moved. To continue providing valuable feedback, please use the updated form available at the link below: London Ataxia Clinic Feedback Form Survey Subscribe To Our Newsletter
- [Recurring Donation](https://www.ataxia.org.uk/donate-to-us/recurring-donation/) - DONATE TO ATAXIA UK SETUP YOUR REGULAR DONATION Thank you for your interest in making a regular gift to Ataxia UK & for taking the first steps in helping to create longevity and sustainability in the support and research that Ataxia UK provides. Please fill in your details below to setup your direct debit. If
- [Ataxia UK Trustee Election 2025](https://www.ataxia.org.uk/ataxia-uk-trustee-election-2025/) - Ataxia UK Trustee Elections Your opportunity to vote for a Friend to serve on Ataxia UK's Board of Trustees! We have two candidates standing for one vacant Trustee position. You will find their details below. Voting is now open and closes on 25th September! Please remember the vote is anonymous, we simply need your postcode
- [Community Fundraising](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/community-fundraising/) - Community Fundraising Fundraise in your local community! Hold your own stall and sell scrummy cakes at a local event, cut your hair, do a give a collection tin to your local shop or business, or host an event in your local neighbourhood like a big car wash, host a Ball or a Quiz Night ....
- [Resources And Information](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/resources-and-information/) - Resources And Information Ataxia Resources Click on the type of resource below to find Ataxia UK's publications, leaflets and guides on the information you need. All of these publications are available in print to request from the office (office@ataxia.org.uk); however to save on costs and our impact on the environment, we've made them available to
- [South West Specialist Nurse Launch Event Booking Form](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/southwest-launch-booking-form/) - South West Specialist Ataxia Nurse Launch Event today - Booking now closed Saturday 10 May 2025 Mercure Rougemont Hotel Exeter 10:30am - 4:30pm We're pleased to invite you to a one-day event to launch our new Specialist Ataxia Nurse service in the South West. This is your chance to meet Camilla Notley, who is our
- [South West Specialist Nurse Launch Event](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/south-west-launch/) - South West Specialist Ataxia Nurse Launch Event Saturday 10 May 2025 Mercure Rougemont Hotel Exeter Saturday 10 May 2025 Mercure Rougemont Hotel Exeter 10:30am - 4:30pm We're pleased to invite you to a one-day event to launch our new Specialist Ataxia Nurse service in the South West. This is your chance to meet Camilla
- [Research News](https://www.ataxia.org.uk/ataxia-research/research-news/) - Research News Catch up on the latest news from across the ataxia research world right here. If you are interested in taking part in research, please click here for current opportunities. If you would like to find out about the research we are currently funding, please click here. For other enquiries, or if you can't
- [Maya](https://www.ataxia.org.uk/maya/)
- [2024 Conference Roadshow](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/2024-conference-roadshow/) - Ataxia UK is coming to you Find out more Ataxia UK is coming to you! We'll be travelling around the UK to the capitals of the devolved nations to connect with Friends in a series of one-day events featuring an action-packed programme. The programme will be similar in each location, with some sessions tailored specifically
- [Senior Management Team](https://www.ataxia.org.uk/senior-management-team/) - Senior Management Team Meet our Senior Management Team... Chief Executive OfficerSue Millman Sue Millman has been the Chief Executive of Ataxia UK since May 2007. Her background is in social care and she was previously Director of Support for Advance Housing and Support, managing services to people with learning difficulties and mental ill-health. Before this
- [Rare Disease Day 2025](https://www.ataxia.org.uk/rare-disease-day-2025/) - Raise ataxia awareness by sharing your story this Rare Disease Day This Rare Disease Day, 28th February 2025, our aim is to share your unique experiences because ataxia is 'more challenging than you can imagine' Did you know that there are 3.5 million people in the UK living with a rare condition? And that 1
- [16-30's](https://www.ataxia.org.uk/support-services/16-30s/) - 16-30's Group Who are the 16-30's Group? The group is for anyone with ataxia aged between 16 and 30 years old, looking to meet others and make friends. The group is to support young people with ataxia and acts as a support network. Speaking to others who know how you feel can sometimes be the
- [Join Ataxia UK](https://www.ataxia.org.uk/join-ataxia-uk/) - Join Ataxia UK Why Should I Join Ataxia UK? If you have ataxia, you care for someone with ataxia or you're affected by ataxia in any sort of way, this membership is for you. Becoming a friend of Ataxia UK means you'll gain access to: Quarterly Ataxia Magazine Monthly e-newsletter Medically approved information Information about
- [Getting Around](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/getting-around/) - Getting Around Advice for getting around. A Helping Hand with Motability Phil Hobbs operates a Fleet Cost Analysis Consultancy which identifies areas where businesses can save money on their day to day operational vehicle costs. Phil has extensive knowledge throughout the motor industry, and wants to help people with ataxia receive what they deserve when
- [What Is Ataxia?](https://www.ataxia.org.uk/about-ataxia-uk/what-is-ataxia/) - What Is Ataxia? Ataxia... what's that? Any person with ataxia will hear this question a lot. With only 10,000 people in the UK who are diagnosed, ataxia is a rare condition; here, we explain what it is. You can find some examples of how to explain ataxia to others, too. The Science Stuff What is
- [Rare Disease Day 2023](https://www.ataxia.org.uk/rare-disease-day-2023/) - Raise ataxia awareness by sharing your story this Rare Disease Day This Rare Disease Day, our aim is to highlight how well-coordinated care can make a real difference in people's quality of life. This includes a wide range of healthcare professionals such as GPs, specialist hospital consultants, specialist nurses, physiotherapists, occupational therapists, speech and language
- [Autoimmune and Gluten Ataxia support group meeting with Professor Marios Hadjivassiliou](https://www.ataxia.org.uk/gluten-ataxia-meeting/) - Autoimmune and Gluten Ataxia support group meeting with Professor Marios Hadjivassiliou Our next Autoimmune and Gluten Ataxia support group meeting will be held on Thursday 12th December from 14:00-16:00pm. We are delighted to announce that for this meeting, Professor Marios Hadjivassiliou, a consultant neurologist working at one of the specialist ataxia centres, has agreed to
- [Regional runs](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/regional-runs/) - Fundraising Events in your area East of England Events Join events in the East of England to support Ataxia UK! Ireland Events Join events in Ireland to support Ataxia UK! London Events Join events in London to support Ataxia UK! Midlands Events Join events in the Midlands to support Ataxia UK! North East Events Join
- [Christmas Jumper Day!](https://www.ataxia.org.uk/christmas-jumper-day/) - Christmas Jumper Day 2024! Join in Christmas Jumper Day for Ataxia UK! December 2024 Get dressed up in your finest silly sweater and join in with Christmas Jumper Day! At the Office This December, host your Christmas Jumper Day with your colleagues! Whether you're working from home, or back to the office full time, everyone
- [ICAR 2024 Registration](https://www.ataxia.org.uk/icar-2024-registration/) - International Congress for Ataxia Research 2024 - Delegate Registration We are excited to have you participate in the 2024 edition of International Congress of Ataxia Research. It will be held November 12-15 in London (Leonardo Royal Hotel London Tower Bridge). Registration includes attendance at all sessions, as well as the welcome reception. Book using the
- [Great North Run 2024](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/great-north-run-2024/) - Great North Run 2024 Great North Run, 8 September 2024 The iconic Great North Run returns in September with it's much loved City to Sea course! Starting in the heart of Newcastle, you'll run the city and out to South Shields along the coast as you cross over the famous Tyne Bridge and past Gateshead International Stadium towards that unforgettable finish line feeling and
- [Euro-ataxia 2024 Conference Booking](https://www.ataxia.org.uk/euro-ataxia-2024-conference-booking/)
- [Kiltwalk 2023](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/kiltwalk-2023/) - Kiltwalks 2024 Scotland's Kiltwalks 2024! What is a Kiltwalk? Kiltwalks are mass participation walking events that raise much-needed funds charities and projects, such as Ataxia UK. Every year Kiltwalk events take place across Scotland - Glasgow, Aberdeen, Dundee and Edinburgh and they're back for 2024! There are 4 dates and locations for your diary -
- [Abseils](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/abseils-skydives-bungee/abseils/) - ABSEILS Are you a thrill-seeker looking for a different challenge, or do you want to conquer your fear of heights? Then why not take on an adrenaline-fuelled event! Perfect for individuals, couples, groups of friends, family & colleagues - reach new heights and experience spectacular views while raising money for those affected by ataxia. Accessibility:
- [Ataxia UK Spring Raffle](https://www.ataxia.org.uk/get-involved/spring-raffle/) - Ataxia UK Spring Raffle 2024 Play Ataxia UK's 2024 Spring Raffle and be in with the chance of winning up to £200 plus other exciting prizes! The annual Spring Raffle raises money for the work we do at Ataxia UK. With every ticket you buy, not only do you have a great chance of winning,
- [Training](https://www.ataxia.org.uk/healthcare-professionals/training/) - Training Ataxia Training Days The aim of Ataxia Training Days is to increase awareness of the ataxias among healthcare professionals. These events are open to a variety of different healthcare professionals who work in various fields, from neurology to speech therapy. A typical training day attracts over 70 attendees, and a wide range of topics
- [Amsterdam Marathon 2024](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/amsterdam-marathon/) - Amsterdam Marathon 2024 Amsterdam Marathon: 20 October 2024 The main distance during the TCS Amsterdam Marathon is the TCS Marathon. Enjoy the cosmopolitan city of Amsterdam and walk along the most attractive passages of the capital. The course in Amsterdam is known for its flat, fast and historic character. The start and finish will take
- [Help drive research and support people with ataxia](https://www.ataxia.org.uk/feb-24/) - Help drive research & support people affected by ataxia "There is still no cure or treatment. Research is the only way to get there." - Yanita Your gift can help people like Yanita by driving research and providing support. Donate today Let's help grow the community dedicated to ataxia research... In addition to a
- [London Landmarks 2023](https://www.ataxia.org.uk/get-involved/london-landmarks-2023/) - London Landmarks 2023 This page was built as a legacy of the success of the 2023 London Landmarks Half Marathon. Our runners raced through the streets of Central London, passing iconic landmarks such as Big Ben, the Gerkin and Nelsons Column. They did an exceptional job training and fundraising, we are so proud of our
- [Brighton Marathon 2023!](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/post-5704/) - BRIGHTON MARATHON 2023 Brighton Marathon 2023 Starting at Preston Park, through the city and along the iconic Madeira Drive and finishing at the vibrant Beach Village, it really is a spectacular event! Want to be on #TeamAtaxia UK next time? We have just 10 spaces available, so please let us know you want to run
- [Bungee](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/abseils-skydives-bungee/bungee-2/) - Bungee Jumping Bungee Jump Would you consider doing an adrenaline-fuelled bungee jump? If you think you could take that one step off a bridge, platform or even skyscraper for the greater good, then taking on a charity bungee jump is for you! This high octane, one-off event is really great for those who only have
- [RK Styles](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/rkstyles/) - RK Styles Our Corporate Partner RK Styles have chosen us at their national Charity of the year! RK Styles, the UK's leading supplier of corporate clothing and personal protective equipment. "We are honoured to partner with Ataxia UK, a charity that is making a real difference in the UK. Ataxia is a rare and complex
- [A-Z Fundraising Ideas](https://www.ataxia.org.uk/get-involved/events-and-fundraising/a-z-fundraising/) - A-Z Fundraising Ideas Do you want to fundraise for Ataxia UK but need some inspiration? Look no further as we have an A-Z list of fundraising ideas. From running a marathon to a clothes swap, there is an opportunity for everyone to make an impact. A AbseilArt StallAuction B Birthday FundraiserBake Sale Book Sale C Collection
- [Swimming](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/swimming/) - Swimming Great North Swim Dive into nature as the Great North Swim returns to Brockhole in Windermere on Friday 7 - Sunday 9 June 2024. Great North SwimRun SwimRun is based on teamwork, passion, and closeness to nature, teams of two embark on a seamless journey across the landscape, taking on land and water Swim
- [Team and Obstacle Events](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/team-and-obstacle-events/) - Team and Obstacle Events Team and Obstacle Events Spartan Sprint, Super and Beast! Test your strength and willpower in one of the world's best obstacle events, and choose from 3 different races - the Sprint, Super or Beast! Inflatable Obstacle Runs Bigger and bouncier thank ever. These Unique Inflatable Obstacle Course Race (OCR) has less
- [Inflatable Fun](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/abseils-skydives-bungee/inflatable/) - Inflatable Obstacle Course The World's Largest and Best Inflatable Obstacle Run The world's largest and best fun run the 'Inflatable 5K' has got even bigger and bouncier. These Unique Inflatable Obstacle Course Race (OCR) has less Running and even more obstacles in 2024. New Obstacles, new pumping Music Zones and new Locations. It is going
- [Spartan Sprint, Super and Beast!](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/team-and-obstacle-events/spartan-sprint-super-and-beast/) - Spartan sprint, Super and Beast! Expect to be challenged and surprised while conquering Spartan's signature obstacles throughout different courses, and finish in epic fashion jumping over fire in the festival area! There's a Spartan experience for everyone, with three main race types: Sprint 3 miles / 5 km, 20 Obstacles The Spartan Sprint puts endurance
- [Treks](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/treks/) - Walks and Treks Set yourself an awesome goal and test yourself by trekking a long-distance trail for Ataxia UK. There are lots more treks available in the UK and abroad - to find out more and sign up for one, please visit Charity Challenges website: https://www.charitychallenge.com/choose-your-challenge and Global Adventure Challenges website: https://www.globaladventurechallenges.com/activity/trek Hadrian's Wall Trek
- [Hadrian's Wall](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/hadrians-wall/) - Hadrian's Wall Step back in time and trek 25 miles in one day or in one weekend! This most ancient of charity treks takes us from Lanercost Priory to Brocolitia, encompassing some of the most visited and fascinating ruins. Explore the UNESCO World Heritage Site and follow in the footsteps of the Roman legions on
- [Ultra Challenge Series](https://www.ataxia.org.uk/ultrachallenge/) - Ultra Challenge Series Ultra Challenge Series 2024! AS A TEAM OR INDIVIDUAL - FOR YOU, FOR CHARITY - 25KM, 50KM, 75KM, or 100KM (some shorter 10KM distances also available) Are you a walker, jogger, or runner looking for a challenge - to test yourself, or to get in shape? If so, these events are for
- [Winter Wonderwheels 2024](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/winter-wonderwheels-2024/) - Winter Wonderwheels Winter Wonderwheels This December, get your superhero alter ego to clock up kilometers and help Santa deliver his presents At Home Winter Wonderwheels (20 November - 5 December) Take on any challenge you choose and walk, peddle, push, swim, skip, or use you super senses to clock up your kilometers to
- [The Big Give Christmas Challenge 2023 – Give the Gift of Support](https://www.ataxia.org.uk/tbg23/) - This year, over 300 Friends of Ataxia UK came together to raise a wonderfully festive total of £47,659 during the Christmas Challenge week. Exceeding the original target by an amazing £3,659 and helping fund the expansion of vital ataxia services. Not to mention the best part - this total still excludes offline donations and Gift
- [Christmas Pub Quiz for a Cause](https://www.ataxia.org.uk/christmas-pub-quiz-ataxiauk/) - CHRISTMAS PUB QUIZ FOR A CAUSE Organise a fun Christmas Pub Quiz down your local whilst supporting Ataxia UK! Grab your friends, family, colleagues and sports team & head to your lovely local for a Christmas Pub Quiz in support of Ataxia UK! Register your quiz below in the sign-up form so we can send you a
- [Virtual Christmas Cards Ataxia UK!](https://www.ataxia.org.uk/virtual-christmas-cards/) - Virtual Christmas Cards Save waste and purchase an e-card! https://www.dontsendmeacard.com/ecards/charities/ataxia-uk E-cards ensure you share Christmas joy without having to worry over the impact on the environment. Making the card You can choose from four fun designs and you can write your own personalised message on the inside. A virtual card is a perfect way to
- [Annual Conference 2023 Volunteer Booking](https://www.ataxia.org.uk/ac23-volunteer-booking/) - Ataxia UK 2023 Annual Conference Volunteer ticket booking We are delighted to bring you the first-ever hybrid Ataxia UK Annual Conference 2023. It will take place at the Radisson Blu, East Midlands Airport on Friday 20th and Saturday 21st October. We are very much looking forward to welcoming as many of you as possible in-person.
- [Development of a PRIME editing therapy for Ataxia-8 due to the c.121 A to T point mutation](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/prime-editing-therapy-development/) - Development of a PRIME editing therapy for Ataxia-8 due to the c.121 A to T point mutation Principal researchers: Prof Jacques Tremblay, Department of Molecular Medicine, Faculty of Medicine, Laval University (Canada) Scientific summary The researchers aim to develop a therapy for Spastic Ataxia Type-8 by correcting mutations in the NKX6-2 gene by PRIME editing.
- [Development of a selective high throughput screening assay for the discovery of compounds replacing frataxin in FA](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/frataxin-selective-high-throughput-screening-assay-development/) - Development of a selective high throughput screening assay for the discovery of compounds replacing frataxin in FA Principal researchers: Dr Benoit D'Autréaux, CNRS-CEA-Université Paris-Sanclay (France) Scientific summary: Friedreich's ataxia (FA) is a neurodegenerative and cardiac disease caused by defective expression of frataxin (FXN), a mitochondrial protein of elusive function. This research proposes to explore new
- [Development and Validation of SIMOA-based total and mutant Ataxin-2 Immunoassay for biomarker studies in SCA2 and SCA3](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/development-and-validation-of-simoa-based-total-and-mutant-ataxin-2-immunoassay-for-biomarker-studies-in-sca2-and-sca3-2/) - Development and Validation of SIMOA-based total and mutant Ataxin-2 Immunoassay for biomarker studies in SCA2 and SCA3 Principal researchers: Dr Stefan Hauser, Prof Schöls Ludger and Jacob Helm, German Center for Neurodegenerative Diseases (Germany). Scientific summary This project aims to identify single nucleotide polymorphisms (SNPs) associated with the cytosine-adenine-guanine (CAG) trinucleotide repeat expansion that causes
- [Development and Validation of SIMOA-based  total and mutant Ataxin-2 Immunoassay for biomarker studies in SCA2 and  SCA3](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/development-and-validation-of-simoa-based-total-and-mutant-ataxin-2-immunoassay-for-biomarker-studies-in-sca2-and-sca3/) - Development and Validation of SIMOA-based total and mutant Ataxin-2 Immunoassay for biomarker studies in SCA2 and SCA3 Principal researchers: Dr Jeannette Hübener-Schmid, Institute for Medical Genetics and Applied Genomics, University of Tübingen (Germany) Scientific summary Spinocerebellar Ataxia Type 2 (SCA2) is a devasting monogenic neurodegenerative disease where no curative therapy is currently available. But
- [Looking beyond the central nervous system in SCA3: nerve and muscle ultrasound as potential imaging markers to quantify and monitor peripheral nervous system degeneration.](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/nerve-and-muscle-ultrasound-sca3-project/) - Research Project Looking beyond the central nervous system in SCA3: nerve and muscle ultrasound as potential imaging markers to quantify and monitor peripheral nervous system degeneration Principal researchers: Roderick Maas, Bart van de Warrenburg, and Nens van Alfen, Department of Neurology, Radboud University Medical Center, Nijmegen (The Netherlands) Lay Summary As well as difficulties
- [QR Code Landing Page](https://www.ataxia.org.uk/qr-code-donate/) - COLLECTION TIN DONATE PAGE HOW TO MAKE A DONATION If you would like to make a donation to Ataxia UK in general, please use the form below.If you would prefer to donate to a specific fundraiser or to donate to scientific research, please visit our 'Donate to Ataxia Research' page or Donate to a Fundraiser
- [Ataxia UK Event for UK-Based Researchers](https://www.ataxia.org.uk/ataxia-research/research-conferences/ataxia-uk-event-for-uk-based-researchers/) - Ataxia UK Event for UK-Based Researchers Ataxia UK is pleased to be hosting a 1-day event for UK-based ataxia researchers on Tuesday 12th September 2023 at St Giles Hotel, Bedford Avenue, London, WC1B 3GH. The event will include talks from research groups throughout the UK, information on how Ataxia UK can facilitate research, and a
- [Register your interest in joining our Two Steps Towards Speedier Ataxia Diagnosis campaign](https://www.ataxia.org.uk/register-your-interest-in-joining-our-two-steps-towards-speedier-ataxia-diagnosis-campaign/) - Sign up to raise awareness with our Two Steps Towards Ataxia Diagnosis campaign Thank you so much for expressing interest in taking part in this year's International Ataxia Awareness Day campaign. Following last year's success, we've decided to repeat the two easy steps to help raise awareness of the struggle people with ataxia experience before receiving
- [IAAD 2023 registration confirmation](https://www.ataxia.org.uk/iaad-2023-registration-confirmation/) - Thank you for taking Two Steps Towards Speedier Ataxia Diagnosis this year & welcome to #TeamAtaxiaUK We'll be in touch with further details by email & your fundraising pack will be posted to you. Please allow until early September for your fundraising pack to arrive. If you haven't received your fundraising pack by the middle of
- ['A Touch of Cornwall' by Freda Burley](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/supporter-events/a-touch-of-cornwall/) - 'A Touch of Cornwall' by Freda Burley A book of poetry by Freda Burley, published by St Mary's Methodist Church in Cornwall The lovely Freda Burley has published abook of poems. All proceeds are being donated to Ataxia UK. "I was 16 years old when I was diagnosed with ataxia and had lioved a free
- [Supporter Events](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/supporter-events/) - Our Community Supporters Charity Ball, Rivenhall Oaks Golf Centre, Essex - Saturday 16 April Get 16 April in your diaries and your Ball attire at the ready! Organised by Charlotte Tibaldi. Parkhouse Patchwork Group Exhibition 15-17th June 2023 An exciting Exhibition and Raffle! 'A Touch of Cornwall' by Freda Burley Freda Burley has had her
- [Improving the diagnosis and management of gluten ataxia](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/improving-the-diagnosis-and-management-of-gluten-ataxia/) - Research Project Principal researchers: Prof Marios Hadjivassiliou, Department of Neuroscience, Sheffield Teaching Hospitals NHS Trusts (UK) Ataxia UK, Coeliac UK and Neurocare (part of Sheffield Hospitals Charity) and the Greaves and Withey Foundation have awarded funding to Professor Marios Hadjivassiliou, Director of the Sheffield Ataxia Centre, Sheffield Teaching Hospitals NHS Trust, and colleagues, to help
- [Support Ataxia UK At Work](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/) - Support Ataxia UK at Work or with your Club Support Ataxia UK at Work or with your Club Over the years, people affected by ataxia have benefited enormously from partnerships with organisations supporting Ataxia UK. In return, working with Ataxia UK enables companies to realise their Corporate Social Responsibility (CSR) or Social Responsibility (SR) objectives,
- [Organisational Support](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/organisations-support/) - Organisations We are incredibly grateful to have organisations support the work we do at Ataxia UK. From football clubs, to corporations, we value the backing of these fantastic groups. RK Styles RK Styles, the UK's leading supplier of corporate clothing and personal protective equipment, have chosen Ataxia UK as their national Charity of the Year
- [Porthmadog Golf Club](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/porthmadog-golf-club/) - Porthmadog Golf Club Vice Chair Captain Sandra Creamer and the ladies of Porthmadog Golf Club have chosen to fundraise for Ataxia UK through 2023. "My husband Andrew has Cerebella ataxia which was diagnosed over 30 years ago... I would like to raise money in my year as Lady Captain at my Golf Club." - Sandra
- [Novel biomarkers of oxidative stress in Friedreich’s ataxia](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/novel-biomarkers-of-oxidative-stress-fa/) - Research Project Novel biomarkers of oxidative stress in Friedreich's ataxia Principal researchers: Prof Peter Clayton, Prof Philippa Mills, Dr Youssef Khalil and Prof Paola Giunti, UCL Great Ormond Street Institute of Child Health, and the Ataxia Centre, UCL Institute of Neurology (UK) Scientific Summary Niemann Pick Type C (NPC) is a rare condition which can
- [Personalized gene editing approach for the treatment of Spinocerebellar Ataxia type 1 (SCA1)](https://www.ataxia.org.uk/ataxia-research/for-researchers/research-funded-by-ataxia-uk/personalized-editing-sca1-project/) - Research Project Personalized gene editing approach for the treatment of Spinocerebellar Ataxia type 1 (SCA1) Principal researchers: Dr Francesca Salvatori, University of Ferrara (Italy) Scientific Summary Spinocerebellar ataxia type 1 (SCA1) is a dominant ataxia, caused by an abnormal trinucleotide CAG repeat expansion in the ataxin-1 (ATXN1) gene, which produces the ataxin-1 protein. In this project,
- [Patient Pathways](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/patient-pathways/) - Patient Pathways Patient Pathways An important part of Ataxia UK's work is improving treatment and healthcare for people affected by ataxia. Due to the rarity of the ataxias, many healthcare professionals will not be familiar with them. In the Healthcare Professionals area of the website, you can find out how to refer patients to a
- [InControl Project](https://www.ataxia.org.uk/get-involved/volunteer-for-ataxia-uk/incontrol-project/) - InControl Project InControl Project In 2019, Ataxia UK won a grant for three years of support from the Lottery Community Fund for a programme to study isolation and loneliness in the ataxia community and develop volunteering in England. One of the key elements of our Strategic Plan is to enable people to feel supported, and
- [Ataxia UK's Research Strategy 2022 – 2025](https://www.ataxia.org.uk/ataxia-research/for-researchers/our-research-strategy/ataxia-uk-2022-2025/) - Ataxia UK's Research Strategy for 2022 to 2025 Find out more The ataxias are a group of rare neurological conditions, with a current estimate of well over 100 different types already discovered and new ataxias continuing to be identified. Many are progressive and complex conditions for which there are no approved treatments. There are
- [Our Research Strategy](https://www.ataxia.org.uk/ataxia-research/for-researchers/our-research-strategy/) - Our Research Strategy Following extensive consultation and discussion, Ataxia UK have launched a new overall Strategic Plan 2022-2025, which you can read here. You can read more about our general aims and objectives on our About Our Research page. Subscribe To Our Newsletter LATEST NEWS AllCerebellar ataxiaCerebellar ataxia pharma newsFriedreich's ataxiaFriedreich's ataxia pharma newsResearch NewsYour
- [Medical Guidelines](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/) - Medical Guidelines Medical Guidelines Our updated and expanded Medical Guidelines were produced to help healthcare professionals in the diagnosis and management of people with ataxia. These guidelines are the result of extensive consultation with ataxia specialist neurologists and other healthcare professionals. They include comprehensive sections on diagnosis, medical interventions for symptom relief and therapies. In
- [Six Nations Rugby Sweepstake](https://www.ataxia.org.uk/get-involved/events-and-fundraising/sixnationsrugby/) - SIX NATIONS RUGBY SWEEPSTAKE Six Nations for Ataxia UK! Here are three easy and fun ways to get involved! Team or Teams of Six Gather 6 of you together (or if you have more people then just have more than one group of 6!) and ask them to donate an entry fee (we suggest from
- [Help Raise Ataxia Awareness this Spring](https://www.ataxia.org.uk/may-23/) - Help increase awareness & end slow diagnosis "Had I been diagnosed years ago, I would not have time stolen from me." - Ben Your gift can help people like Ben that are just starting their ataxia journey. Donate today Let's end this slow diagnosis disaster... Diagnosis is the first step towards managing ataxia. Sadly, this
- [Ataxia UK's Strategic Plan 2022-2025](https://www.ataxia.org.uk/strategic-plan-22-25/) - Ataxia UK's Strategic Plan - 2022 - 2025 "In September 2021, as we commenced work on our new Strategic Plan, with the pandemic still raging, and a recession looming, we were well aware that we needed to ensure that we increased our emphasis on services to improve financial services and emotional well-being. Subsequent national events
- [Recruiting Participants For Research](https://www.ataxia.org.uk/ataxia-research/for-researchers/recruiting-patients-for-research/) - Recruiting Patients For Research Recruiting Participants For Research Ataxia UK helps researchers to find participants for their projects and trials. If you need help finding participants, then get in touch. We are very happy to publicise externally-funded research projects through our social media channels, our quarterly Ataxia Magazine, monthly e-newsletter, our 'Taking part in research'
- [Virtual Art Exhibition 2023](https://www.ataxia.org.uk/get-involved/virtual-art-exhibition-2023/) - Virtual Art Exhibition 2023 Through My Gaze This page was built as a legacy to the success of the 2023 Virtual Art Exhibition 'Through My Gaze'. The Artists: We exhibited artists from professional backgrounds, hobbyists and those with ataxia. It was vital we involved the ataxia community in the project and opened the exhibit to
- [Will Writing Guide Form Completed - Thank You](https://www.ataxia.org.uk/will-writing-request-completed/) - THANK YOU FOR REQUESTING A COPY OF OUR WILL WRITING GUIDE Thank you for requesting a copy of the FREE Will writing guide, codicil form and checklist to help you understand the Will writing process and plan for the future. We will send this out ASAP and you should receive this to the address you
- [Patchwork House Raffle and Exhibition](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/supporter-events/parkhouse-raffle-and-exhibition/) - Parkhouse Patchwork Group Join the Parkhouse Patchwork Group in Bude, Cornwall from 15th to 17th June! Joan Lashbrook, the Chairlady of Parkhouse Patchwork group has been exhibiting the wonderful, homemade 'Lockdown Log Cabin' Patchwork Quilt. This is your chance to visit the exhibition and potentially win the quilt in the raffle! Admission to the event
- [Volunteer For Ataxia UK](https://www.ataxia.org.uk/get-involved/volunteer-for-ataxia-uk/) - Volunteer For Ataxia UK Volunteering Ataxia UK simply wouldn't have the same impact without the ongoing and generous support of our volunteers. From running our Support Groups to volunteering on the Helpline, we aim to provide a range of opportunities that match people's skills and interests. Most volunteering roles can be done from home, all
- [James Loach in-memoriam](https://www.ataxia.org.uk/james-loach-in-memoriam/) - In loving memory of James Loach aged just 19 Thank you for your kind donation in memory of James which will help make a difference to those affected by Friedreich's and other ataxias. Your support is greatly appreciated.
- [Give the Gift of Speech to the Ataxia Community](https://www.ataxia.org.uk/speech-23/) - Give the gift of speech to the ataxia community "A voice really does affect one's ability to communicate one's true self." - Rebecca Help people like Rebecca retain their voices & identities. Donate today About Voice Banking Symptoms of ataxia commonly include difficulties and deterioration of speech. Which is why Voice Banking is a crucial service for the
- [Volunteering FAQs](https://www.ataxia.org.uk/get-involved/volunteer-for-ataxia-uk/volunteering-faqs/) - FAQs Volunteering FAQ's Why volunteer for Ataxia UK? You will be making a real difference for people affected by ataxia. There are various roles to choose from, whether that is volunteering with our Branch and Support groups or writing blog posts, all our volunteer opportunities will make an impact. Also, if you are looking to
- [Help with the cost of living](https://www.ataxia.org.uk/help-with-the-cost-of-living/) - Cost of living with ataxia As cost of living continues to rise, we want to share some information with our Friends on where to go for some possible extra help. On this page, you can keep up to date with the latest information, support and guidance about tackling the cost of living crisis with ataxia.
- [Search Results](https://www.ataxia.org.uk/search_gcse/) - Search Results
- [AAA++ Appeal](https://www.ataxia.org.uk/aaaappeal-2/) - All About Ataxia ++ Appeal Thank you for donating to the AAA++ Appeal Your donation will be used to produce and deliver more seminars on a range of topics to people throughout the UK. If you would like to vote for the seminar you would like producing first - please write this in the comment
- [Virtual Fundraising](https://www.ataxia.org.uk/get-involved/events-and-fundraising/virtual-fundraising/) - Virtual Fundraising At Home and Virtual Fundraising Ideas Due to the current Covid-19 situation, many major fundraising events, on which we rely on for a significant portion of our income, are being postponed or cancelled. Ataxia UK is doing everything we can to ensure we continue to support everyone affected by ataxia, including increasing this
- [Virtual Annual Conference 2022](https://www.ataxia.org.uk/virtual-annual-conference-2022/) - What a turnout, what a conference! Thank you to everyone that made the 2022 Virtual Conference possible. With almost 150 people in attendence and fantastic feedback, this was the best Virtual Ataxia Conference to date. Some of the highlights included the Mindfulness class by Jen Wood, the inspiration section with Scott Armitt's video & the
- [Ataxia Classic 2020](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/cycle/ataxia-classic-2020/) - Ataxia Classic 2020 On Sunday 27 September 2020 we will be gathering our cyclists* to take part in the first ever Ataxia Classic challenge in Yorkshire to raise funds and awareness for Ataxia UK. There is a 56.8km and 100km route, and so whether you're a super or standard cyclist, or maybe you just fancy a new
- [Christmas Raffle 2022!](https://www.ataxia.org.uk/get-involved/christmas-raffle/) - Christmas Raffle 2022! The Christmas Raffle 2022 is the perfect opportunity to tick some boxes off your Christmas shopping list. Our first and second-prize winners will win a selection of merchandise from the animated TV show Bluey! This includes a toy set, rucksack, watch and more! Our third prize winner will win a toy set
- [Post #4297](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/isle-of-wight-challenge/) - Isle of Wight Challenge Join up to 2,000 adventurers walking through the Isle of Wight on 10-11th July! The Isle of Wight Challenge has moved from the original date of 1st-2nd May and is now happening on the 10-11th July. Great challenges need great settings - and few are better than the Island's coastal path.
- [FixSCA6](https://www.ataxia.org.uk/fixsca6/) - In loving memory of David & Gloria Redston To help fund research into preventing, treating and curing SCA6 ataxia. Gifts and messages left in memory of David & Gloria Redston From David and Gloria Redston for research into this CAG repeat late-onset rare diseaseDavid RedstonDonated On: 21 May 2020 - £600.00 Edward McKinnonDonated On: 06
- [Information and Resources for Researchers](https://www.ataxia.org.uk/ataxia-research/for-researchers/information-and-resources-for-researchers/) - Information and Resources for Researchers Information and Resources for Researchers Stay in touch to stay up to date with the latest research, information and resources for ataxia research. Sign up for research updates If you are interested in keeping up to date with ataxia research, join our Researcher's Registry. You can also stay up to
- [Bill Treacher – in memory](https://www.ataxia.org.uk/in-memory-bill-treacher/) - In Memory Of Bill Treacher 4 June 1930 - 5 November 2022 Bill Treacher was born in 1930 in Dagenham. After serving in the RAF and a spell at sea travelling the world with P&O, all the while saving his earnings to put himself through drama school, Bill Treacher had a long and successful acting
- [Plan And Register Your Event](https://www.ataxia.org.uk/get-involved/events-and-fundraising/plan-and-register-your-event/) - Plan and Register Your Event Plan and register your fundraising event today! How we can help Like the look of one of our events, planning your own event or need some fundraising ideas? We will be there every step of the way to help you hit your fundraising target and will provide you with the
- [International Congress for Ataxia Research 2022](https://www.ataxia.org.uk/icar-2022/) - International Congress for Ataxia Research 2022 "We're delighted to finally be meeting the ataxia research community, pharma and other patient groups face-to-face." - Sue Millman, Ataxia UK CEO From 1st to 4th November 2022, Team Ataxia UK attended the International Congress for Ataxia Research in Dallas. On this page, we are bringing you some of
- [15 years of Scholar Tee](https://www.ataxia.org.uk/15-years-of-scholar-tee/) - DONATE TO ATAXIA UK Donate to Ataxia UK - With thanks to Scholar Tee Thank you for supporting Ataxia UK and enjoy your evening at the big 15 Years of Scholar Tee Gala Party! Make a One Off donation: FUNDRAISE FOR US Take part in a challenge or create your fundraiser. Every penny you raise
- [The Big Give 2022](https://www.ataxia.org.uk/the-big-give-2022/) - The Big Give 2022 The Big Give 2022 This December you can help give the gift of speech as well as help to fund vital ataxia research by DOUBLING your Christmas gift at no extra cost! WHAT CAN YOUR DOUBLED DONATION DO?Those living with ataxia frequently rank speech and communication problems as one of the
- [The Big Give 2021](https://www.ataxia.org.uk/the-big-give-2021/) - The Big Give 2021 The Big Give 2021 This December you can help give the gift of speech as well as help to fund vital ataxia research by DOUBLING your Christmas gift at no extra cost! WHAT CAN YOUR DOUBLED DONATION DO?Those living with ataxia frequently rank speech and communication problems as one of the
- [IAAD 2022 donation](https://www.ataxia.org.uk/iaad-2022-donation/) - Your donation will help raise awareness & speed up ataxia diagnosis. Thank you. Back to IAAD page Back to home page
- [Sylvia Downie in-memoriam](https://www.ataxia.org.uk/in-memory-sylvia-downie/) - In loving memory of Sylvia Downie Dedicated to the memory of Sylvia Downie 1924 - 2022. Please leave a message or memory below and help grow Sylvia's tribute. Your support is greatly appreciated.
- [Benefits](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/benefits/) - Benefits Advice Applying for Benefits PIP and ESA Preparing for assessments with Turn2us One difficult aspect of living with ataxia is accessing the support you are entitled to. Over the past few years, applying to the Personal Independence Payment (PIP) or Employment and Support Allowance (ESA) benefit schemes has become harder and assessments tougher. The
- [Florence Nightingale Aid In Sickness Trust](https://www.ataxia.org.uk/support-services/grants/florence-nightingale-aid-in-sickness-trust/) - Florence Nightingale Aid In Sickness Trust Florence Nightingale Aid In Sickness Trust The Florence Nightingale Aid in sickness Trust provides funding towards medical equipment for children and adults of all ages affected by a disability or long-term illness. Grants considered by the trust are:- Medical aids, specialist beds, electrics and manual wheelchairs, standing wheelchairs, power
- [Barchester's Charitable Foundation](https://www.ataxia.org.uk/support-services/grants/barchesters-charitable-foundation/) - Barchester's Charitable Foundation Barchester's Charitable Foundation The Barchester's Charitable Foundation was created by Barchester Healthcare in 2000 to give something back to people in the communities where the Barchester care homes operate. As a grant giving charity, the Foundation distributes over £150,000 per year to individuals and small community groups/charities across England, Scotland and Wales.
- [Ataxia Advocacy Service](https://www.ataxia.org.uk/ataxia-advocacy-service/) - Ataxia UK's Advocacy Service Our Helpline and Advocacy Service is here to provide you with one-to-one support for a range of issues. Get in touch today Some of the issues we can help with include Benefits Housing Finances Care needs Health needs Mental health End of life care Aids & adaptations Transport & travel Employment Education
- [Big Give Christmas 2022 - Pledge Page](https://www.ataxia.org.uk/bgpledge/)
- [Swishing](https://www.ataxia.org.uk/get-involved/events-and-fundraising/swishing/) - Clothes Swishing Clothes Swishing Our lovely supporter Olivia Clark is a regular Clothes Swisher and here tells us all about Swishing and how to do it! What is swishing? "Swishing" is a clothes swapping event. It's a really fun event where you bring your unwanted, good-quality clothing or accessories to swap for some new and
- [Mike Testing](https://www.ataxia.org.uk/mike-testing/) - LATEST NEWS Subscribe To Our Newsletter FUNDRAISE FOR US Take part in a challenge or create your fundraiser. Every penny you raise will help those affected by ataxia. Click to find out more DONATE To make either a one off or recurring donation which will help fund research into treatments and cures and supports those
- [Latest News](https://www.ataxia.org.uk/latest-news/) - LATEST NEWS ATAXIA UK LATEST NEWS Below you can find all of our latest news relating to fundraising, volunteering and general updates from across the charity. All16-302016 Research News ArchiveAtaxia MagazineAtaxia research conferencesAtaxia UK newsCOVID-19FundraisersIn MemoryLatest NewsPast supporter eventsResearchResearch NewsUncategorisedVirtual FundraisingYour BlogYour Fundraising Stories Virtual Activities 07/06/2022 | Latest News Chair Pilates – next session
- [Terms And Conditions](https://www.ataxia.org.uk/terms-and-conditions/) - Terms And Conditions Terms and Conditions (1) Introduction. These terms of use govern your use of our website; by using our website, you agree to these terms of use in full. If you disagree with these terms of use or any part of these terms of use, you must not use our website. Our website
- [Support Services](https://www.ataxia.org.uk/support-services/) - Support Services Ataxia UK provide a number of different support services available to everyone. Access To Our Helpline Knowing what to do next after a diagnosis, or wondering how to support a loved one can be a bit intimidating; Ataxia UK are here to offer support, information and advice to anyone affected by ataxia. Read
- [Grants](https://www.ataxia.org.uk/support-services/grants/) - Ataxia UK Grants Grants for people with ataxia There are a number of trusts, foundations and wonderful individuals out there who offer financial assistance towards a range of things which can benefit those living with ataxia. Including the purchasing of a range of items and services, from aids and adaptations made to the home all
- [Regional runs](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/cardiff10k/) - Cardiff 10K and 2K The Cardiff Metropolitan University Cardiff 10K and 2K will take place on Sunday 4 September 2022. Entries are open now! We have limited free places available, and so make sure you contact us soon to avoid disappointment! You can run and take part in your self-propelled wheelchair. Join #TeamAtaxiaUK and thousands of
- [Ed's Diagnosis Journey](https://www.ataxia.org.uk/eds-diagnosis-journey/) - Ed, one of Ataxia UK's media ambassadors, talks about his diagnosis journey. Hi, My name's Ed and I have hereditary cerebellar ataxia - specifically, SYNE1-related spinocerebellar ataxia (ARCA8). Symptoms have slowly crept up on me during my 20s and I recently received a diagnosis (shortly after turning 30 in 2021). How did it start? During
- [Ataxia Videos](https://www.ataxia.org.uk/support-services/ataxia-videos/) - Ataxia Videos Ataxia UK Videos Below are all of our awareness and support videos, where you can access advice and information directly from people with ataxia and their families, loved ones and friends. We also have some research videos which are aimed at ataxia researchers, parents and people with an interest in research. All Research
- [Keswick to Barrow and Coniston to Barrow Walks](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/keswick-to-barrow-and-coniston-to-barrow-walks/) - Keswick to Barrow & Coniston to Barrow 2022 Keswick to Barrow and Coniston to Barrow Walks 7 May 2022 Run or walk one of the UK's most stunning trails through The Lake District: Keswick to Barrow (K2B), or take the children along for a mini adventure, from Coniston to Barrow. Explore the world of the
- [Fundraising Ball](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/supporter-events/fundraisingball/) - Fundraising Ball, near Witham, Essex 16 April 2022 Charity Ball, Rivenhall Oaks Golf Centre 16 April 2022 Charlotte Tibaldi is organising a wonderful Charity Ball at the Rivenhall Oaks Golf and Events Centre in Witham on Saturday 16 April from 7pm. Tickets are priced at £45 which gives you a glass of bubbles on arrival,
- [Ataxia UK Virtual Conference](https://www.ataxia.org.uk/ataxia-uk-events/ataxia-uk-virtual-conference/) - Ataxia UK Virtual Conference Ataxia UK Virtual Conference Friday 16, Saturday 17 and Monday 19 October 2020 Friday 16 October headlines Session name Presenters PM 12:45 Welcome and Agenda Sue Millman Welcome and Agenda (FA delegates on 2nd Zoom meeting) Richard Brown 1:00 -1:45 Drs Question & Answers Cerebellar Ataxias Dr
- [Feb Appeal](https://www.ataxia.org.uk/febappeal/) - Feb Appeal Funding research such as NanoSCA3: Development of brain-targeted nanobodies for application in spinocerebellar ataxia type 3 therapy A donation today can help fund projects like this one, which looks to discover if targeted nanobodies (that is nanobodies modified to infiltrate the brain, as Trojan horses, and specifically bind and neutralize specific matter) can
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- [Copy of Events And Fundraising](https://www.ataxia.org.uk/get-involved/events-and-fundraising-copy/) - Christmas Fundraisers with Ataxia UK Please click through the links below to find some great Christmas fundraiser ideas! Christmas Pub Quiz with a Cause Read More SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsResearch NewsYour Blog Community & political involvement
- [Other Advice](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/other-advice/) - Other Advice Mental Wellbeing The National Neurology Patient Experience Survey showed that more than half of the respondents with ataxia felt that their mental wellbeing needs were not being met and over two-thirds were not asked about their mental wellbeing by health or social care professionals. We have gathered resources on mental health for you
- [For Physiotherapists](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/allied-health-professional-interventions/for-physiotherapists/) - For Physiotherapists For Physiotherapists This section aims to provide guidance to physiotherapists and other healthcare professionals mostly for people with progressive ataxia, although it may also be of some value for the non-progressive cerebellar ataxias. There has been little research assessing physiotherapy interventions in people with progressive ataxia therefore some of the evidence has also
- [Captain Tom 100 Challenge](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/team-and-obstacle-events/captain-tom-100-challenge/) - Captain Tom 100 Challenge Captain Tom 100 Challenge From Friday 30 April to Bank Holiday Monday 3 May 2021, join Team Ataxia UK as we celebrate Captain Tom Moore's amazing achievement and raise funds to continue the vital work. What is the event? Friday 30th April would have been Captain Toms' 101st birthday the one-year anniversary
- [For Speech and Language Therapists](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/allied-health-professional-interventions/for-speech-and-language-therapists/) - For Speech and Language Therapists For Speech and Language Therapists The progressive ataxias may affect communication and/or swallowing function. The most obvious communication difficulty encountered is that of dysarthria which is a motor speech disorder resulting in altered voice quality, speech clarity, naturalness and intelligibility. Communication may also be affected in cases where there is
- [Treatable Ataxias](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/medical-interventions/treatable-ataxias/) - Treatable Ataxias Treatable Ataxias Gluten Ataxia Gluten ataxia (GA) has been defined as a sporadic otherwise idiopathic cerebellar ataxia associated with the presence of serological evidence of gluten sensitivity (usually antigliadin IgA or IgG with or without endomysium and transglutaminase antibodies) and has been shown in a one-year controlled trial to be responsive to a
- [Royal Parks Half Marathon](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/royal-parks-half-marathon/) - Royal Parks Half Marathon Royal Parks Half Marathon: October 2021 Goof luck and thank you to our amazing runners who are running in one of the UK's most beautiful half marathons, on 10 October 2021! The Royal Parks Half Marathon is a spectacular run through central London and past its world-famous landmarks, including Buckingham Palace,
- [Run with Barry](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/post-6203/) - Run with Barry: Virtual 50km Challenge Run with Barry Virtual 5km to 50km challenge! October 2021 This October set yourself a challenge. Run any distance from 5km from in October to Support Barry Hunt's incredible 50km Ultra Marathon in Bournemouth's Run to the Sea on 16 October. Barry has been a Trustee and Scientific Advisor for
- [Winter Wonderwheels](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/winter-wonderwheels/) - Winter Wonderwheels Winter Wonderwheels This December, get your superhero alter ego to clock up kilometers and help Santa deliver his presents This Winter, you can choose to take on your mission at home between 20 November and 5 December or you can go a little further afield on 5 December at Dorney Lake, Windsor, and if
- [Introduction and Full Document](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/introduction-and-full-document/) - Introduction and Full Document Ataxia Medical Guidelines aim to provide recommendations for healthcare professionals on the diagnosis and management of people with progressive ataxia. To download the full document, including references, click here. A summary of the Ataxia Guidelines has been published in 'Guidelines', the online resource summarising clinical guidelines for primary care and can
- [Birds of a Feather](https://www.ataxia.org.uk/birds-of-a-feather/) - Birds of a Feather Join the group that is most similar to yourself to share and learn about others' experiences of ataxia. This will take place on Friday at 4pm. Friedreich's ataxia (under 30's) Friedrech's ataxia (over 30's) Parents of children with ataxia Ataxia of an unknown cause/idiopathic Ataxia cuased from an injury or other
- [It Works For Me](https://www.ataxia.org.uk/it-works-for-me/) - It Works For Me Growing up with FA, living in Zambia and motherhood... with Alalia Cardozo.
- [Ataxia Angel Thank You Page](https://www.ataxia.org.uk/ataxia-angels-thank-you/) - Ataxia Angels - Thank You Thank you for your interest in becoming an Ataxia Angel We will be in contact very shortly! SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsResearch News Trustee elections Read More → US FDA and European
- [Virtual Workshops](https://www.ataxia.org.uk/virtual-workshops/) - Virtual Workshops You have the opportunity to learn about a topic in more depth at our virtual workshops this year. Choose two workshops to participate in over the weekend - one on Saturday and the other on Sunday. Have a read below about what's on offer this year and which days they are running. Keep a
- [Volunteer policies and procedures](https://www.ataxia.org.uk/volunteer-policies-and-procedures/) - Welcome to the Ataxia UK Volunteers' page. Please feel free to browse and view our policies and procedures created especially for our volunteers. If you have any questions or concerns, please contact the InControl team on volunteering@ataxia.org.uk. Thank you for being a volunteer with Ataxia UK - we really appreciate your time and support!
- [Collaborations](https://www.ataxia.org.uk/ataxia-research/collaborations/) - Collaborations Our Research Partners Ataxia organisations We are an active member of Euro-ataxia, the federation of ataxia charities across Europe. Our CEO, Sue Millman, is the Secretary General of Euro-ataxia, which currently consists of nineteen member groups. For more information on euro-ataxia, please take a look at our Euro-ataxia leaflet. Ataxia UK also works closely
- [Links to other Organisations](https://www.ataxia.org.uk/about-ataxia-uk/links-to-other-organisations/) - Euro-ataxia Sue Millman, CEO of Ataxia UK, is Secretary and Ataxia UK provide the administration. Neurological Alliance (England) Sue Millman, CEO of Ataxia UK, is on the Board. Neurological Alliance of Wales Trustee, Carol McCudden, is on the Executive. Genetic Alliance UK - incorporating Rare Disease UK Sue Millman, CEO of Ataxia
- [MIMO Testing](https://www.ataxia.org.uk/get-involved/events-and-fundraising/virtual-fundraising/minds-in-movement-online-copy/) - Minds In Movement: Ataxia UK's Online Art Exhibition Fundraiser This is row 1 of the timed content testing This is row 2 of the timed content testing Thank you for visiting this holding page. This page and link will be live with the online exhibition from Wednesday 4th August 2021. We look forward to welcoming
- [Yeovil Rugby Club: Music of the Pitch](https://www.ataxia.org.uk/yeovil-rugby-club-music-of-the-pitch/) - Yeovil Rugby Club: Music of the Pitch Support Yeovil Rugby Club's Fundraiser for Ataxia UK! 14 August 2021 We are thrilled that this year Yeovil Rugby Club has chosen Ataxia UK as their chosen charity to support in their Music on the Pitch event! Buuy your ticket(s) to enjoy Four Music Acts, a Casino and
- [ataxianetherlands](https://www.ataxia.org.uk/ataxianetherlands/)
- [In Memory of Steve](https://www.ataxia.org.uk/in-memory-of-steve/) - In memory of Steve Steve sadly passed away peacefully in Warrington Hospital on 1st May 2021. Steve was loving partner, father, brother and friend to many. He liked to play his guitar and loved all sports... but especially Everton FC! Steve recently retired as a graphic designer after running his own business for many years.
- [Cup and Shield Winners](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/cup-and-shield-winners/) - Anne Ford Cup & Ernie Heath Shield Since 1992 we have awarded the Anne Ford Cup to 29 exceptional people with ataxia who have made a special contribution to the ataxia community. In 2007 we introduced the Shield in memory of Ernie Heath the founding Chairman of the newly constituted Ataxia UK, and have honoured
- [Donor Dashboard](https://www.ataxia.org.uk/donor-dashboard-3/)
- [April Appeal](https://www.ataxia.org.uk/covidappeal/) - Ataxia UK COVID Appeal: A year on... It will have been just over 12 months since Boris Johnson made a televised statement saying: “now is the time for everyone to stop non-essential contact”. From this point onwards, many of us have had our whole world turned upside down, and for some of us, the impact
- [Donor Dashboard](https://www.ataxia.org.uk/donor-dashboard-2/)
- [Donor Dashboard](https://www.ataxia.org.uk/donor-dashboard/)
- [Jurassic Coast Challenge](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/jurassic-coast-challenge/) - Jurrasic Coast Challenge Walk, Jog or Run this UNESCO World Heritage Site to raise money for Ataxia UK! This event is part of the Ultra Series Challenge, in which you can join 2000 adventurers of all experience levels & ages and Walk, Jog or Run the spectacular Jurassic Coast. The Jurassic Coast Challenge is fun,
- [Employee Fundraising](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/employee-fundraising/) - Employee Fundraising Employee Fundraising Enter staff into fundraising events, such as the Prudential cycle Ride London 100, Royal Parks Half Marathon or the Cardiff 10k and fundraise as a team! This is a great way to build camaraderie and have fun whilst raising awareness and funds. Fundraising teams will be provided with Ataxia UK t-shirts
- [Charity Of The Year Partnerships](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/charity-of-the-year-partnerships/) - Charity of the Year Partnerships Charity of the Year Partnerships We will work together and create a bespoke, mutually beneficial programme that works towards your CSR goals, and is in line with your company interests. Read below about how Origin Broadband and Incorporatewear have collaborated with us in the past couple of years. Origin Broadband
- [Match Funding](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/match-funding/) - Match Funding Match Funding Many companies offer Matched Giving as a way to support employees doing charitable events and this is a brilliant way to boost an employee's fundraising. Ataxia UK can write to your employer to confirm that you are fundraising for the charity. We can send across any fundraising materials if your employer
- [Payroll Giving](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/payroll-giving/) - Payroll Giving Payroll Giving Donating directly through your salary, also known as Give As You Earn or Payroll Giving, is an easy, tax-efficient way of donating with a regular gift to Ataxia UK. If you pay tax at the basic rate, for every £1 that you earn, 20p is paid to Ataxia UK from tax.
- [Gifts In Kind](https://www.ataxia.org.uk/get-involved/support-ataxia-uk-at-work/gifts-in-kind/) - Gifts in Kind Gifts in Kind Gifts in kind are a valuable way to support people affected by ataxia non-financially. Ataxia UK have enjoyed wonderful collaborations with corporate organisations that have been of enormous benefit, including the incredibly generous gifts in kind received from world renowned marketing agency TBWA. Other examples of possible gifts in
- [Make A Donation](https://www.ataxia.org.uk/get-involved/make-a-donation/) - Make A Donation Ataxia UK provide a number of different ways for you to donate to the section of the charity that you want. Donate to Ataxia UK Read More Give in Memory Read More Donate to Research Read More Play Chance2Win Play Chance2Win Read More Donate to a Fundraiser Read More SUBSCRIBE TO OUR
- [For Occupational Therapists](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/allied-health-professional-interventions/for-occupational-therapists/) - For Occupational Therapists For Occupational Therapists Introduction This section aims to provide occupational therapists working with ataxia patients with information about how common impairments impact on typical activities and occupations; and provide advice on interventions. In the absence of specific research, a philosophical approach, expert opinion and relevant progressive neurological conditions research will be drawn
- [Symptomatic Treatments](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/medical-interventions/symptomatic-treatments/) - Symptomatic Treatments Symptomatic Treatments Muscle spasticity, spasms & joint contractures Spasticity is the presence of increased muscle tone or hypertonia, caused by a lesion of the upper motor neurones which can cause muscle stiffness, spasms and pain. Persistently raised muscle tone can result in abnormal posturing of body parts which if prolonged can result in muscle
- [Referrals](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/patient-pathways/referrals/) - Referrals Research, Appendix & References Following the referral to a neurologist, in many cases it may be relevant for either the GP or the neurologist to refer patients to other specialists. Depending on the symptoms experienced, and the type of ataxia a patient is diagnosed with, a variety of different specialists will be involved in
- [Volunteers' Week](https://www.ataxia.org.uk/get-involved/volunteer-for-ataxia-uk/volunteers-week/) - Volunteers Week Volunteers' Week Volunteers' Week at Ataxia UK By James Atkins, InControl Manager Everyone across the UK has faced some unexpected challenges this year. For myself, having joined Ataxia UK in January for the InControl project, I have had to readjust our initial plans. As we are all in lockdown, we can’t meet in
- [Get Involved](https://www.ataxia.org.uk/get-involved/) - Get Involved There are many ways you can get involved with Ataxia UK and you can find out more information below. Make A Donation Read More Events & Fundraising Read More Leave Legacy Read More Support Us At Work Read More Other Ways To Give Read More Volunteer For Ataxia Read More Ataxia Awareness and
- [Accessibility](https://www.ataxia.org.uk/accessibility/) - Accessibility Accessibility We are committed to providing a website that is accessible to the widest possible audience, regardless of technology or ability. We are actively working to increase the accessibility and usability of our website and in doing so adhere to many of the available standards and guidelines. This website endeavours to conform to level Double-A
- [The Great Birmingham Run 2021 - Half Marathon](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/the-great-birmingham-run-2021-half-marathon/) - The Great Birmingham Run 2021 The Great Birmingham Run 2021 - Half Marathon Take part in Birmingham's half marathon on the 10th October 2021 England's second largest city is the perfect stage for this event that attracts competitors from across the UK and around the world. The course starts and finishes in the city centre
- [Covid19 Information](https://www.ataxia.org.uk/covid19-information/) - Covid19 Information Covid19 news All the updates from Ataxia UK relating to Covid19. SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS All Research News Your Blog Surviving and keep going! Read More → Omaveloxolone (Omav) Update Read More → Neurofilament light tracks
- [Research, Appendix & References](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/research-appendix-references/) - Research, Appendix & References Research, Appendix & References Research Recent progress There have been a number of advances in the last few years in the identification of new genes causing specific ataxias, largely due to recent developments in gene sequencing technologies. Worldwide research using next generation sequencing and whole exome/genome sequencing has led to the
- [Our Activities Across Volunteers Week](https://www.ataxia.org.uk/get-involved/volunteer-for-ataxia-uk/our-activities-across-volunteers-week/) - Our Activities Across Volunteers' Week Our activities across Volunteers' Week Sign up for some 'at home' high spirited fun! Wednesday 3 June Room 101 @ 2pm-3pm Based on the BBC series Room 101, we are encouraging people to send in nominations of something they want binned moving forward. It could be traffic wardens, Health and
- [Managing Motivation and Anxiety Workshops](https://www.ataxia.org.uk/ataxia-uk-events/managing-motivation-and-anxiety-workshops/) - Managing Motivation and Anxiety Workshops Come along to our Managing Motivation and Anxiety Workshops to discover tools and techniques to help you during the pandemic. Throughout February, InControl Programme Manager James Atkins will be running hour long sessions featuring tips and tricks to support your mental wellbeing during lockdown. The sessions will be held on
- [Virtual Conference 2020](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/virtual-conference-2020/) - Virtual Ataxia Conference Please find a selection of presentations that highlight the talks of the day. SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsCOVID-19Latest NewsResearch News FA drug clinical trial update: Larimar Therapeutics Read More → Covid-19 vaccine update Read More → Book
- [Annual Conference 2019](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/annual-conference-2019/) - Annual Conference 2019 Ataxia UK Annual Conference 2019 Please find a selection of presentations that highlight the talks of the day: SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS All Ataxia UK news Latest News Research News The Big Give Christmas Challenge
- [Virtual Santa Fun Run](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/virtual-santa-fun-run/) - Virtual Santa 5km Fun Run It's that time of year again! Make the most of your festive flair and Take part in this fun event with friends and family, or competitively on your own You can complete your run anytime between now and 25 December 2020 You can wear your usual running and Ataxia UK
- [Virtual Halloween 5km Run!](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/virtual-halloween-5km-run/) - Virtual Halloween 5km Run! What do I wear?Take part in your regular fitness gear, or get spooky with fancy dress! How to Take Part and do I get a medal?It costs £25 to enter and when you register you will receive a goodie bag in the post including your own personal running number. Once you're
- [Donate To A Fundraiser](https://www.ataxia.org.uk/get-involved/make-a-donation/donate-to-a-fundraiser/) - Donate To A Fundraiser If you would like to donate to a specific fundraiser, please find them below Andy Franks London Marathon 2020 I am running this year's London Marathon for two family members my niece Sophie and nephew Oliver. Sophie was born with a rare form of Congenital Cerebella Ataxia. For almost the last
- [Training New Page](https://www.ataxia.org.uk/ataxia-research/training-new-page/) - New Training Page Research, Appendix & References this is where we can start typing anything we would like SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllLatest NewsResearch News Omaveloxolone (Omav) Update Read More → Neurofilament light tracks SCA3 progression Read More →
- [Fundraising At School](https://www.ataxia.org.uk/get-involved/events-and-fundraising/fundraising-at-school/) - Fundraising At School Fundraising At School Fundraising at school is an excellent way to raise awareness of your child's or pupil's ataxia; to help them feel more assured among school fellows and to feel ownership over how they are perceived. We recently created a downloadable fundraising pack for schools, designed to encourage fundraising within your
- [Contact](https://www.ataxia.org.uk/contact/) - Contact Us Contact Ataxia UK Ataxia UK Helpline (open Mon-Thurs 10.30am - 2.30pm): help@ataxia.org.uk 0800 995 6037 Ataxia UK Office office@ataxia.org.uk 020 7582 1444 Ataxia UK12 Broadbent CloseLondonN6 5JW Departments Fundraising and Development: fundraising@ataxia.org.uk Communications: communications@ataxia.org.uk Research: research@ataxia.org.uk Finance: accounts@ataxia.org.uk General: office@ataxia.org.uk Helpline: help@ataxia.org.uk SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong.
- [Join Ataxia Testing](https://www.ataxia.org.uk/join-ataxia-testing/) - Join Ataxia Testing Join Ataxia Form Testing Page - Do Not Share This Link SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsLatest NewsResearch News The Big Give Christmas Challenge 2020 Read More → Measuring the faulty protein in SCA3 Read
- [IARC 2015](https://www.ataxia.org.uk/ataxia-research/research-conferences/iarc-2015/) - IARC 2015 About ARC-2015 The International Ataxia Research Conference 2015 took place in Windsor, England on the 25th-28th of March. It was hailed as a great success for the advancement of Ataxia research with new collaborations being formed and ground breaking research being presented. Delegates arrived from all over the world to discuss the latest
- [Annual Conference 2018](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/annual-conference-2018/) - Annual Conference 2018 Ataxia UK Annual Conference 2018 Please find a selection of presentations that highlight the talks of the day: SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsLatest NewsResearch News The Big Give Christmas Challenge 2020 Read More →
- [Annual Conference 2017](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/annual-conference-2017/) - Annual Conference 2017 Ataxia UK Annual Conference 2017 Please find a selection of presentations that highlight the talks of the day: SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsLatest NewsResearch News The Big Give Christmas Challenge 2020 Read More →
- [Regional Conference in Scotland 2018](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/regional-conference-in-scotland-2018/) - Regional Conference in Scotland 2018 Ataxia UK Regional Conference in Scotland 2018 For those of you who were not able to join us for our Regional Conference in Scotland this year, please find a selection of presentations that highlight the talks of the day: SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong.
- [Ataxia UK Welsh Conference 2019](https://www.ataxia.org.uk/support-services/ataxia-uk-conferences/ataxia-uk-welsh-conference-2019/) - Regional Conference in Wales 2019 Ataxia UK Welsh Conference 2019 Slides For those of you who were not able to join us for our Regional Conference in Wales this year, please find a selection of presentations that highlight the talks of the day: SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please
- [Collections](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/community-fundraising/collections/) - Collections Collections tins are a great, simple and easy way to raise money for Ataxia UK and awareness of ataxia. Ask your local shop, pub, restaurant, school or workplace if they're happy to display one or more collection tins for Ataxia UK. If you're planning on carrying out public street collections, or outside train stations
- [Rough Runner](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/team-and-obstacle-events/rough-runner/) - Rough Runner An event like no other..where Gladiators meets Total Wipeout, Ninja Warrior and Takeshi's Castle! Choose between a 5km, 10km or 15km run and challenge yourself with 20 epic, unique obstacles all inspired by popular TV game shows. Take part by yourself or in a team and experience first hand what Total Wipeout, Gladiators
- [rideATAXIA](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/cycle/rideataxia/) - rideATAXIA You may have heard that the Friedreich's Ataxia Research Alliance (FARA) event, rideATAXIA, has gone GLOBAL this year! We are pleased to be part of the event and would love you to get involved, too. rideATAXIA is combining the efforts of Philly, Dallas and the worldwide rideATAXIA community to create the rideATAXIA Global Challenge.
- [Great Wall of China Discovery](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/treks/great-wall-of-china-discovery/) - Great Wall of China Discovery Voted one of the New Seven Wonders of the World, be rest assured that the Great Wall of China provides an astonishing backdrop to take in whilst trekking. The Great Wall Discovery is a thrilling challenge of twists, turns, ups and downs. Beginning four hours north of Beijing, this week-long
- [Icelandic Lava Trek](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/treks/icelandic-lava-trek/) - Icelandic Lava Trek The Iceland Lava Trek takes in thundering waterfalls, steaming lava fields, plunging fjords and spurting fountains. Trekking against a background of multi-coloured rocks and crossing the phenomenal Landmannalaugar, the route is through one of the most actively volcanic and alien landscapes in Iceland, providing awe-inspiring views at every step. The challenge is
- [Leeds Half Marathon 2020](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/leeds-half-marathon-2020/) - Leeds Half Marathon 2020 Leeds Half Marathon - 22 November 2020 Firmly established as one of the highlights on Leeds' sporting calendar thanks to its challenging course, enthusiastic crowds and fantastic atmosphere. The route starts in The Headrow alongside Victoria Gardens, heads out of the city centre, takes in a section of the Ring Road
- [Walk For IAAD](https://www.ataxia.org.uk/get-involved/events-and-fundraising/challenges/runs/walk-for-iaad/) - Walk For IAAD We know this year is a bit different, but walking is great for the soul, so why not join in? Please just remember to adhere to Government guidelines in relation to social distancing and groups of six or less. Here are some tips to get you started... Choose a date and time
- [IARC 2017](https://www.ataxia.org.uk/ataxia-research/research-conferences/iarc-2017/) - IARC 2017 International Ataxia Research Conference 2017 In September 2017, Ataxia UK together with GoFar (Italian organisation) and FARA (American organisation) organised the second International Ataxia Research Conference in Pisa, Italy. This is a key event for researchers, clinicians and representatives from pharma/biotech companies who have interest in research on ataxia. This event was larger
- [IARC 2019](https://www.ataxia.org.uk/ataxia-research/research-conferences/iarc-2019/) - IARC 2019 International Ataxia Research Conference 2019 The 3rd international ataxia research conference, organised by Ataxia UK, FARA, FARA Australia and GoFAR, took place on 14-16 November 2019. It was a great success, with over 400 attendees, including basic science and clinical researchers, 17 patient groups, and representatives from a number of pharmaceutical companies. Attendees
- [Allied Health Professional Interventions](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/allied-health-professional-interventions/) - Allied Health Professional Interventions Allied Health Professional Interventions This section is aimed at providing information to physiotherapists, speech and language therapists and occupational therapists to help manage their ataxia patients. In depth reviews are provided, as this information is not available elsewhere. Medical professionals may be interested in the recommendation tables at the end of
- [Medical Interventions](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/medical-interventions/) - Medical Interventions Medical Interventions This section aims to provide an overview of the medical interventions available for people with progressive ataxias. Section Symptomatic treatments focuses on the treatment of symptoms experienced by people with ataxia, whereas section Treatable ataxias describes the management of the few treatable forms of ataxia in adults and children. Treatable Causes
- [Diagnosis](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/diagnosis/) - Diagnosis Diagnosis Genetics Presentation Investigations Referral Process SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsLatest NewsResearch News The Big Give Christmas Challenge 2020 Read More → Measuring the faulty protein in SCA3 Read More → Helpline update Read More →
- [Patient Pathways](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/patient-pathways/) - Patient Pathways Patient Pathways Reviews and Follow-Up Referrals SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsLatest NewsResearch News The Big Give Christmas Challenge 2020 Read More → Measuring the faulty protein in SCA3 Read More → Helpline update Read More
- [Treatable Causes in Children](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/medical-interventions/treatable-causes-in-children/) - Treatable Causes in Children Research, Appendix & References Some of the treatable conditions mentioned above are seen in children, including: CoQ10 (ubiquinone) deficiency (the most common presentation of this is in children) Episodic ataxia type 2 (intermittent ataxia) Vitamin E deficiency Cerebrotendinous xanthomatosis In addition, the following conditions are also treatable causes of childhood ataxia.
- [Reviews and Fullow Up](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/patient-pathways/reviews-and-fullow-up/) - Reviews and Follow Up Reviews and Follow Up Patients should be offered 6-12 monthly reviews from a neurologist or a specialist ataxia neurologist (see Section Referral process and Appendix 1 for information on Specialist Ataxia Centres). If it is difficult for patients to travel to the hospital, follow-up appointments could be less frequent. Regular follow-up
- [Presentation](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/diagnosis/presentation/) - Presentation Onset may be acute (eg: in a patient with stroke) or it may be gradual. Most of the progressive ataxias are of gradual onset. Rapidity of progression is an important consideration, because such rapid progression of ataxia (over weeks) may indicate paraneoplastic cerebellar degeneration and the need to hunt for covert cancer14. Rapid progression
- [Referral Process](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/diagnosis/referral-process/) - Referral Process Research, Appendix & References Patients presenting with ataxic symptoms should be referred to secondary care, where they should ideally be seen by a paediatrician, if under 16, or adult neurologist. Depending on the clinical state of the patient, this referral may need to be urgent. For example, in a case with a suspected
- [Investigations](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/medical-guidelines/diagnosis/investigations/) - Investigations Adults Details of appropriate investigations for adults are found in Table 3. Primary care investigations to be done by the GP comprise those that are relatively inexpensive, common and widely available. Their purpose is to exclude medical and neurological conditions that may contribute to ataxia. Secondary care investigations are generally done by a neurologist,
- [Sponsors and Funders](https://www.ataxia.org.uk/sponsors-and-funders/) - Sponsors and Funders Sponsors and Funders This page is currently under construction SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllAtaxia UK newsResearch NewsYour Blog Measuring the faulty protein in SCA3 Read More → Helpline update Read More → ‘I’m fine, thanks’ by
- [Resources For Healthcare Professionals](https://www.ataxia.org.uk/healthcare-professionals/resources-for-healthcare-professionals/)
- [Healthcare Professionals](https://www.ataxia.org.uk/healthcare-professionals/)
- [Family And Friends Fund](https://www.ataxia.org.uk/get-involved/other-ways-to-give/family-and-friends-fund/) - Family And Friends Fund Family & Friends Fund Sometimes, family members and friends of people with ataxia want to support their loved ones by starting a Fund for Ataxia UK. You may want do this over a period of years towards a particular target and have a say in how that money is spent. With
- [Other Ways To Give](https://www.ataxia.org.uk/get-involved/other-ways-to-give/) - Other Ways To Give There are many different ways you can give to Ataxia. Give As You Shop Read More Family & Friends Fund Read More SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllLatest NewsResearch Now that’s what Ataxia UK calls Lockdown
- [Recurring Donations](https://www.ataxia.org.uk/recurring-donations/)
- [Donation Confirmation](https://www.ataxia.org.uk/donation-confirmation/)
- [Donation Failed](https://www.ataxia.org.uk/donation-failed/) - We're sorry, your donation failed to process. Please try again or contact site support.
- [Donation History](https://www.ataxia.org.uk/donation-history/)
- [Research Publications](https://www.ataxia.org.uk/ataxia-research/research-publications/) - Research Publications Ataxia UK Research Publications Below you will find links to all publications around our research. SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllLatest NewsResearch Now that’s what Ataxia UK calls Lockdown Read More → Update From Us Read More →
- [Help And Advice](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/) - Help And Advice Ataxia UK provide a number of different help and advice sections as detailed below. Benefits Advice One difficult aspect of living with ataxia is accessing the support you are entitled to. Click the link below to find out more information. Read More Financial Advice With so much information on offer to everyone,
- [Housing Advice](https://www.ataxia.org.uk/newly-diagnosed/help-and-advice/housing/) - Housing Advice Housing Advice Although there is no content currently on this page, please check back regularly to see when we update this page with relavant help and information. SUBSCRIBE TO OUR NEWSLETTER ! ! ! SUBSCRIBE Something went wrong. Please check your entries and try again. LATEST NEWS AllLatest NewsResearch Now that’s what Ataxia
- [Headley Trust](https://www.ataxia.org.uk/support-services/grants/headley-trust/) - Headley Trust Headley Trust The Headley Trust is one of the Sainsbury Family Charitable Trusts and is a grant-making organisation with charitable status. It has a small grants programme providing grants of up to £2,000 to help disabled people purchase equipment for use in their own homes. The type of equipment eligible for consideration includes

## DearPDF Post

- [Magazine 221](https://www.ataxia.org.uk/pdfs/magazine-221/)

## Donation Forms

- [Recurring Donation Form](https://www.ataxia.org.uk/donations/donation-form/)
- [Donation basket](https://www.ataxia.org.uk/donations/17763/)
- [Chance 2 Win](https://www.ataxia.org.uk/donations/chance2win/)

## Products

- [Unisex White T-Shirt](https://www.ataxia.org.uk/shop/clothing/unisex-white-t-shirt/) - Plain white T-shirt (100% cotton) with large full colour ATAXIA logo print. If you live outside of the UK, please enquire about postage and packaging by contacting our Fundraising department before making a purchase: call us on 020 7582 1444 or email fundraising@ataxia.org.uk
- [Unisex White T-Shirt (Youth)](https://www.ataxia.org.uk/shop/clothing/unisex-white-t-shirt-youth/) - Plain white T-shirt (100% cotton) with large full colour ATAXIA logo print. Classic fit Seamless Twin needle 2.2 cms. collar Taped neck and shoulders Tear away label Twin needle sleeve and bottom hems Quarter-turned to eliminate Centre crease If you live outside of the UK, please enquire about postage and packaging by contacting our Fundraising department before making a purchase: call us on 020 7582 1444 or email fundraising@ataxia.org.uk
- [Women's Purple V-Neck T-Shirt](https://www.ataxia.org.uk/shop/clothing/womens-purple-v-neck-t-shirt/) - Plain purple V-neck (100% cotton) with yellow ATAXIA logo print. Note: These t-shirts are made slim fitting, we would suggest ordering one size bigger than usual If you live outside of the UK, please enquire about postage and packaging by contacting our Fundraising department before making a purchase: call us on 020 7582 1444 or email fundraising@ataxia.org.uk
- [Unisex Running Vest](https://www.ataxia.org.uk/shop/clothing/unisex-running-vest/) - Purple running vest with yellow trim and yellow ATAXIA logo. 100% breathable polyester sports dri-fit material.
- [Medical Guidelines](https://www.ataxia.org.uk/shop/information-and-advice/medical-guidelines/) - Our updated and expanded Medical Guidelines were produced to help healthcare professionals in the diagnosis and management of people with ataxia. These guidelines are the result of extensive consultation with ataxia specialist neurologists and other healthcare professionals. They include comprehensive sections on diagnosis, medical interventions for symptom relief and therapies. In November 2018 they were
- [Wedding Favour Silver Pin Badge](https://www.ataxia.org.uk/shop/accessories/wedding-favour-silver-pin/) - 25 x 9 mm silver pin badge. Nickel coated.
- [Men's Blue T-Shirt](https://www.ataxia.org.uk/shop/clothing/mens-blue-t-shirt/) - Blue T-shirt (100% cotton) with purple ATAXIA logo print. If you live outside of the UK, please enquire about postage and packaging by contacting our Fundraising department before making a purchase: call us on 020 7582 1444 or email fundraising@ataxia.org.uk
- [Silver Ataxia UK Pin Badge](https://www.ataxia.org.uk/shop/accessories/ataxia-pin-badge/) - 25 mm silver ATAXIA logo pin badge, iron stamped with soft enamel.
- [Selection of 10 Ataxia UK Wristbands](https://www.ataxia.org.uk/shop/accessories/selection-of-10-wristbands/) - Grab yourself a bargain by purchasing a mix of 10 wristbands for the price of 9. A perfect gift for friends and family to spread awareness! Note: We will send out a mixture of 10 wristbands. If you would like a specific set of coloured bands, please state this in the 'Delivery Notes' section when paying.
- [The Brave Princess](https://www.ataxia.org.uk/shop/accessories/the-brave-princess/) - Purchase this beautiful, original painting by our supporter Jessica Barrie. The perfect gift for birthdays and celebrations, while donating to Ataxia UK. Size: 21cm x 30cm
- [IAAD Tote Bag](https://www.ataxia.org.uk/shop/accessories/iaad-2022-merch/iaad-2022-tote-bag/) - Look the part with an International Ataxia Awareness Day tote bag to put your Medical Guidelines in for the walk to your GP Surgery! These natural cotton bags measure 38 x 42cm with shoulder handles and are perfect for shopping, and a day out too. If you live outside of the UK, please enquire about postage and packaging by contacting our Fundraising department before making a purchase: call us on 020 7582 1444 or email fundraising@ataxia.org.uk
- [IAAD Lanyards](https://www.ataxia.org.uk/shop/accessories/iaad-2022-merch/iaad-lanyards/) - Handy and fashionable lanyards with a plastic pocket, ideal for your Ataxia UK ID card. International Ataxia Awareness Day campaign participants get an exclusive £1 discount off the regular price – get in touch with our Fundraising team to receive your voucher code. If you live outside of the UK, please enquire about postage and packaging by contacting our Fundraising department before making a purchase: call us on 020 7582 1444 or email fundraising@ataxia.org.uk
- [Cycle Jerseys](https://www.ataxia.org.uk/shop/clothing/cyclejerseys/) - Cycling fundraisers receive an exclusive discount, so, if you are doing an event and fundraising, please contact fundraising@ataxia.org.uk before purchasing!
- [Unisex Fleece](https://www.ataxia.org.uk/shop/clothing/unisex-fleece/) - Black unisex fleece with yellow 'Ataxia' logo.
- [IAAD Lanyard & Tote Bag pack](https://www.ataxia.org.uk/shop/accessories/iaad-2022-merch/iaad-lanyard-tote-bag-pack/) - Look the part with an International Ataxia Awareness Day tote bag to put your Medical Guidelines in for the walk to your GP Surgery, and why not add the handy and fashionable IAAD lanyard – perfect for your ataxia ID card! International Ataxia Awareness Day campaign participants get an exclusive £1 discount off the regular price of lanyards and £3 off the regular price of tote bags – get in touch with our Fundraising team to receive your voucher code. The natural cotton bags measure 38 x 42cm with shoulder handles and are perfect for shopping, and a day out too. If you live outside of the UK, please enquire about postage and packaging by contacting our Fundraising department before making a purchase: call us on 020 7582 1444 or email fundraising@ataxia.org.uk
- [Gold Ataxia UK Pin Badge](https://www.ataxia.org.uk/shop/accessories/gold-ataxia-uk-pin-badge/) - 25 mm gold plated ATAXIA logo pin badge, iron stamped with soft enamel.
- [Medical Guidelines - DOWNLOAD](https://www.ataxia.org.uk/shop/information-and-advice/management-of-the-ataxias-towards-best-clinical-practice/) - This document aims to provide recommendations for healthcare professionals on the diagnosis and management of people with progressive ataxia. The progressive ataxias are rare neurological conditions, and are often poorly understood by healthcare professionals. Diagnosis has generally been a long process because of the rarity and complexity of the different ataxias. Sorry, we are currently

## Trustees

- [Olivia Wood](https://www.ataxia.org.uk/trustees/olivia-wood/) - ‘Two years ago, my Father was diagnosed with genetic ataxia SCA-6 after progressive balance and speech issues. Following this diagnosis, I underwent genetic testing which showed a predisposition for SCA-6. Ataxia UK were there to help when there was little readily available information and support for those with the condition. They helped connect my Father
- [William Littleboy](https://www.ataxia.org.uk/trustees/william-littleboy/) - Co-Chair
- [Angela Hosie](https://www.ataxia.org.uk/trustees/angela-hosie/) - “I feel joining the Board of Trustees at Ataxia UK is a vital and stimulating role - ensuring the charity is not only reaching its goals but is forward-thinking and creative to run as efficiently as possible. I have cerebellar ataxia and worked, until recently, as a project manager within the international finance and investment
- [Gemma Fish](https://www.ataxia.org.uk/trustees/gemma-fish/) - I'm Gemma Fish, a 32-year-old with Episodic Ataxia Type 2. I have had EA2 since I was 13 months old. I've been involved with my local ataxia support group since 2010, but I've been involved with Ataxia UK itself since 2013. I was first elected as a trustee when I was 23 and I fundraised
- [Rachel Harrison](https://www.ataxia.org.uk/trustees/rachel-harrison/) - Rachel has developed her experience through many volunteer roles. Rachel works in governance, co-production and peer leadership with Hampshire County Council, University of Southampton and within various NHS workstreams. Rachel lives independently with help from PAs who are employed by Rachel using direct payment.
- [Prof Barry Hunt](https://www.ataxia.org.uk/trustees/prof-barry-hunt/) - Professor Barry Hunt has been a trustee of Ataxia UK since 1999. He chaired its Scientific Advisory Committee from its inception in 2000 until March 2012, and continues to be the Committee’s link with the Board of Trustees. In November 2021, Barry left the Board as a trustee but continues as Scientific Advisor to the
- [Kathy Jones](https://www.ataxia.org.uk/trustees/kathy-jones/) - Treasurer of the Board
- [Carol McCudden](https://www.ataxia.org.uk/trustees/carol-mccudden/) - Carol is an Ataxia Ambassador. She looks forward most to "building on the good work that has gone before and being part of exciting times ahead. There are new Trustees with fresh blood and research is bringing treatments closer to our grasp - an exciting time to be on board!".

## Patrons

- [James Moore](https://www.ataxia.org.uk/patrons/james-moore/) - You may recognise James from classic TV Soap Emmerdale where he plays Ryan Stocks. James has cerebral palsy with ataxic symptoms and is a disability activist. James became a patron in 2020 and lends his time by attending the conferences, supporting our social media campaigns and talking to the ataxia community. James recently played on
- [Jamie Raven](https://www.ataxia.org.uk/patrons/jamie-raven/) - Renowned magician and Britain's Got Talent star Jamie Raven has become a patron for Ataxia UK. Jamie rose to prominence back in 2015 when he finished as the runner up on ‘Britain’s Got Talent’, wowing millions along the way with his logic defying magical skills and prompting Simon Cowell to announce, “I now actually believe
- [Dom Joly](https://www.ataxia.org.uk/patrons/dom-joly/) - Dom Joly is a multi-award winning television comedian, journalist and travel writer. He is best known for his hit series Trigger Happy TV: a larger-than-life hidden camera show, which received critical acclaim and went on to be sold to over 70 countries worldwide. Dom has written columns for a number of broadsheets and tabloids throughout
- [Kim Wilde](https://www.ataxia.org.uk/patrons/kim-wilde/) - Kim Wilde shot to fame in 1981 with the international smash hit 'Kids in America.' Some 10 million record sales later and Kim is still writing and performing to audiences across the globe. Ataxia UK is a charity particularly close to Kim's heart after a childhood friend lost a long battle with Friedreich's ataxia. Kim
- [Paul Coia](https://www.ataxia.org.uk/patrons/paul-coia/) - Scottish born TV presenter Paul Coia has supported countless Ataxia UK conferences as host with great professionalism and skill, bringing laughter to our community. Paul can lay claim to being the first ever voice heard on Channel 4 when the broadcaster launched in 1982. After a successful and varied career, his voice can now be
- [Prof Bob Williamson](https://www.ataxia.org.uk/patrons/prof-bob-williamson/) - Bob has been a patron of Ataxia UK since 1991. As a human molecular geneticist who had worked on similar problems with cystic fibrosis, he was closely involved with starting Friedreich's ataxia research at St Mary's Hospital Medical School, University of London. With Sue Chamberlain, he set up the first group hunting for the Friedreich's

## Ataxia Events

- [Dan's Amazing Fundraiser](https://www.ataxia.org.uk/ataxia-events/dans-amazing-fundraiser/)
- [Mike Test Ataxia Event 12th July](https://www.ataxia.org.uk/ataxia-events/mike-test-ataxia-event-12th-july/)
- [Mike Test Ataxia Event](https://www.ataxia.org.uk/ataxia-events/mike-test-ataxia-event/)

## Categories

- [Uncategorised](https://www.ataxia.org.uk/category/uncategorised/)
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- [Ataxia Magazine](https://www.ataxia.org.uk/category/ataxia-magazine/)
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- [PROSPAX](https://www.ataxia.org.uk/category/prospax/)
- [research project](https://www.ataxia.org.uk/category/research-project/)

## Tags

- [drpla](https://www.ataxia.org.uk/tag/drpla/)
- [Friedreich's ataxia](https://www.ataxia.org.uk/tag/friedreichs-ataxia/)
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- [Spastic Ataxias](https://www.ataxia.org.uk/tag/spastic-ataxias/)
- [FA research](https://www.ataxia.org.uk/tag/fa-research/)
- [FA pharma](https://www.ataxia.org.uk/tag/fa-pharma/)
- [SPAX](https://www.ataxia.org.uk/tag/spax/)
- [PROSPAX project](https://www.ataxia.org.uk/tag/prospax-project/)
- [SPAX app](https://www.ataxia.org.uk/tag/spax-app/)
- [Lexeo Therapeutics](https://www.ataxia.org.uk/tag/lexeo-therapeutics/)
- [LX2006](https://www.ataxia.org.uk/tag/lx2006/)
- [Ataxia Gene Therapy](https://www.ataxia.org.uk/tag/ataxia-gene-therapy/)
- [Friedreich's Ataxia Gene Therapy](https://www.ataxia.org.uk/tag/friedreichs-ataxia-gene-therapy/)
- [Specialist Ataxia Centre](https://www.ataxia.org.uk/tag/specialist-ataxia-centre/)
- [Ataxia Centre](https://www.ataxia.org.uk/tag/ataxia-centre/)
- [SCA4](https://www.ataxia.org.uk/tag/sca4/)
- [Ataxia genetics](https://www.ataxia.org.uk/tag/ataxia-genetics/)
- [SCA4 gene](https://www.ataxia.org.uk/tag/sca4-gene/)
- [Alterity Therapeutics](https://www.ataxia.org.uk/tag/alterity-therapeutics/)
- [MSA](https://www.ataxia.org.uk/tag/msa/)
- [MSA pharma](https://www.ataxia.org.uk/tag/msa-pharma/)
- [SCAR17](https://www.ataxia.org.uk/tag/scar17/)
- [PGT](https://www.ataxia.org.uk/tag/pgt/)
- [HFEA](https://www.ataxia.org.uk/tag/hfea/)
- [Family planning](https://www.ataxia.org.uk/tag/family-planning/)
- [Ataxia Physiotherapy](https://www.ataxia.org.uk/tag/ataxia-physiotherapy/)
- [Spastic Ataxia](https://www.ataxia.org.uk/tag/spastic-ataxia/)
- [SPG7](https://www.ataxia.org.uk/tag/spg7/)
- [Ataxia UK Webinar](https://www.ataxia.org.uk/tag/ataxia-uk-webinar/)
- [Spastic Ataxia Type-8](https://www.ataxia.org.uk/tag/spastic-ataxia-type-8/)
- [Spinocerebellar Ataxias](https://www.ataxia.org.uk/tag/spinocerebellar-ataxias/)
- [Mitochondrial Disease](https://www.ataxia.org.uk/tag/mitochondrial-disease/)
- [Cerebellar Ataxias](https://www.ataxia.org.uk/tag/cerebellar-ataxias/)
- [Medicines Approvals](https://www.ataxia.org.uk/tag/medicines-approvals/)
- [OMAV updates](https://www.ataxia.org.uk/tag/omav-updates/)
- [SCA27B](https://www.ataxia.org.uk/tag/sca27b/)
- [SCA](https://www.ataxia.org.uk/tag/sca/)
- [Seelos Therapeutics](https://www.ataxia.org.uk/tag/seelos-therapeutics/)
- [Spastic Ataxia Research](https://www.ataxia.org.uk/tag/spastic-ataxia-research/)
- [ataxia survey](https://www.ataxia.org.uk/tag/ataxia-survey/)
- [Troriluzole](https://www.ataxia.org.uk/tag/troriluzole/)
- [Cerebelllar Ataxia Pharma News](https://www.ataxia.org.uk/tag/cerebelllar-ataxia-pharma-news/)
- [Biohaven](https://www.ataxia.org.uk/tag/biohaven/)
- [Cerebellar ataxia news](https://www.ataxia.org.uk/tag/cerebellar-ataxia-news/)
- [Ataxia Pharma news](https://www.ataxia.org.uk/tag/ataxia-pharma-news/)
- [Cerebellar Ataxia Pharma News](https://www.ataxia.org.uk/tag/cerebellar-ataxia-pharma-news/)
- [Intrabio](https://www.ataxia.org.uk/tag/intrabio/)
- [Huntington's Disease](https://www.ataxia.org.uk/tag/huntingtons-disease/)
- [ICAR 2024](https://www.ataxia.org.uk/tag/icar-2024/)
- [Ataxia Mental Health](https://www.ataxia.org.uk/tag/ataxia-mental-health/)
- [Ataxia Research Paper](https://www.ataxia.org.uk/tag/ataxia-research-paper/)
- [Idiopathic Ataxia](https://www.ataxia.org.uk/tag/idiopathic-ataxia/)
- [Acquired Ataxia](https://www.ataxia.org.uk/tag/acquired-ataxia/)
- [Hereditary Ataxia](https://www.ataxia.org.uk/tag/hereditary-ataxia/)
- [Multiple System Atrophy](https://www.ataxia.org.uk/tag/multiple-system-atrophy/)
- [Cure Rare Disease](https://www.ataxia.org.uk/tag/cure-rare-disease/)
- [Ataxia Symptoms](https://www.ataxia.org.uk/tag/ataxia-symptoms/)
- [Home Adaptations](https://www.ataxia.org.uk/tag/home-adaptations/)
- [Solaxa](https://www.ataxia.org.uk/tag/solaxa/)
- [Progressive Ataxias](https://www.ataxia.org.uk/tag/progressive-ataxias/)
- [AOA2](https://www.ataxia.org.uk/tag/aoa2/)
- [Rehabilitation](https://www.ataxia.org.uk/tag/rehabilitation/)
- [Late Onset FA](https://www.ataxia.org.uk/tag/late-onset-fa/)
- [Omav](https://www.ataxia.org.uk/tag/omav/)
- [MHRA](https://www.ataxia.org.uk/tag/mhra/)
- [Drug Repurposing](https://www.ataxia.org.uk/tag/drug-repurposing/)
- [Your Blog](https://www.ataxia.org.uk/tag/your-blog/)
- [Ataxia](https://www.ataxia.org.uk/tag/ataxia/)
- [Ataxia Blogs](https://www.ataxia.org.uk/tag/ataxia-blogs/)
- [NICE](https://www.ataxia.org.uk/tag/nice/)
- [EMA](https://www.ataxia.org.uk/tag/ema/)
- [Design Therapeutics](https://www.ataxia.org.uk/tag/design-therapeutics/)
- [DT-216P2](https://www.ataxia.org.uk/tag/dt-216p2/)
- [Carers](https://www.ataxia.org.uk/tag/carers/)
- [Carer](https://www.ataxia.org.uk/tag/carer/)
- [Ataxia Funded Research](https://www.ataxia.org.uk/tag/ataxia-funded-research/)
- [Antioxidants](https://www.ataxia.org.uk/tag/antioxidants/)
- [Brain Stimulation](https://www.ataxia.org.uk/tag/brain-stimulation/)
- [NfL](https://www.ataxia.org.uk/tag/nfl/)
- [Biomarker](https://www.ataxia.org.uk/tag/biomarker/)
- [MSA-C](https://www.ataxia.org.uk/tag/msa-c/)
- [SCA2](https://www.ataxia.org.uk/tag/sca2/)
- [Research Impact](https://www.ataxia.org.uk/tag/research-impact/)
- [Research Impact Report](https://www.ataxia.org.uk/tag/research-impact-report/)
- [Ataxia UK-funded Research](https://www.ataxia.org.uk/tag/ataxia-uk-funded-research/)
- [SPAXCOM](https://www.ataxia.org.uk/tag/spaxcom/)
- [AQNEURSA](https://www.ataxia.org.uk/tag/aqneursa/)
- [Fatigue](https://www.ataxia.org.uk/tag/fatigue/)
- [Sleep](https://www.ataxia.org.uk/tag/sleep/)
- [Symptom management](https://www.ataxia.org.uk/tag/symptom-management/)
- [Cardiomyopathy](https://www.ataxia.org.uk/tag/cardiomyopathy/)
- [FDA](https://www.ataxia.org.uk/tag/fda/)
- [SCAN3](https://www.ataxia.org.uk/tag/scan3/)
- [Genetic Testing](https://www.ataxia.org.uk/tag/genetic-testing/)
- [Diagnosis](https://www.ataxia.org.uk/tag/diagnosis/)
- [Clinical Trials](https://www.ataxia.org.uk/tag/clinical-trials/)
- [Ataxias](https://www.ataxia.org.uk/tag/ataxias/)
- [Conference](https://www.ataxia.org.uk/tag/conference/)
- [Event](https://www.ataxia.org.uk/tag/event/)
- [CTAX](https://www.ataxia.org.uk/tag/ctax/)
- [PET imaging](https://www.ataxia.org.uk/tag/pet-imaging/)
- [University of Lisbon](https://www.ataxia.org.uk/tag/university-of-lisbon/)
- [Federico Herrera](https://www.ataxia.org.uk/tag/federico-herrera/)
- [Withaferin A](https://www.ataxia.org.uk/tag/withaferin-a/)
- [mitoNEET](https://www.ataxia.org.uk/tag/mitoneet/)
- [CRISPR](https://www.ataxia.org.uk/tag/crispr/)
- [Research Project](https://www.ataxia.org.uk/tag/research-project/)
- [Solid Biosciences](https://www.ataxia.org.uk/tag/solid-biosciences/)
- [SGT-212](https://www.ataxia.org.uk/tag/sgt-212/)
- [SIMPATHIC](https://www.ataxia.org.uk/tag/simpathic/)
- [Trial readiness](https://www.ataxia.org.uk/tag/trial-readiness/)
- [SIMPATHIC Consortium](https://www.ataxia.org.uk/tag/simpathic-consortium/)
- [Gluten ataxia](https://www.ataxia.org.uk/tag/gluten-ataxia/)
- [Coeliac disease](https://www.ataxia.org.uk/tag/coeliac-disease/)
- [TG6 antibodies](https://www.ataxia.org.uk/tag/tg6-antibodies/)
- [Immune system](https://www.ataxia.org.uk/tag/immune-system/)
- [Gluten-related neurological disorders](https://www.ataxia.org.uk/tag/gluten-related-neurological-disorders/)
- [Gluten sensitivity](https://www.ataxia.org.uk/tag/gluten-sensitivity/)
- [SPAX8](https://www.ataxia.org.uk/tag/spax8/)
- [Specialist ataxia nurse](https://www.ataxia.org.uk/tag/specialist-ataxia-nurse/)
- [spinocerebellar ataxia research](https://www.ataxia.org.uk/tag/spinocerebellar-ataxia-research/)
- [MSA-C research](https://www.ataxia.org.uk/tag/msa-c-research/)
- [neurostimulation](https://www.ataxia.org.uk/tag/neurostimulation/)
- [cerebellar ataxia research news](https://www.ataxia.org.uk/tag/cerebellar-ataxia-research-news/)
- [spinocerebellar ataxia research news](https://www.ataxia.org.uk/tag/spinocerebellar-ataxia-research-news/)
- [Friedreich's ataxia research news](https://www.ataxia.org.uk/tag/friedreichs-ataxia-research-news/)
- [MSA-C research news](https://www.ataxia.org.uk/tag/msa-c-research-news/)
- [nanobodies](https://www.ataxia.org.uk/tag/nanobodies/)
- [Antibodies](https://www.ataxia.org.uk/tag/antibodies/)
- [SCA1](https://www.ataxia.org.uk/tag/sca1/)
- [Spinocerebellar ataxia type 1](https://www.ataxia.org.uk/tag/spinocerebellar-ataxia-type-1/)
- [rare disease](https://www.ataxia.org.uk/tag/rare-disease/)
- [CureDRPLA](https://www.ataxia.org.uk/tag/curedrpla/)
- [individualised genetic therapies](https://www.ataxia.org.uk/tag/individualised-genetic-therapies/)
- [scope](https://www.ataxia.org.uk/tag/scope/)
- [consultation](https://www.ataxia.org.uk/tag/consultation/)
- [N-of-1 trials](https://www.ataxia.org.uk/tag/n-of-1-trials/)
- [Neuropathy](https://www.ataxia.org.uk/tag/neuropathy/)
- [SARA](https://www.ataxia.org.uk/tag/sara/)
- [SARAhome](https://www.ataxia.org.uk/tag/sarahome/)
- [SARA Scale](https://www.ataxia.org.uk/tag/sara-scale/)
- [Ataxia Severity](https://www.ataxia.org.uk/tag/ataxia-severity/)
- [policy](https://www.ataxia.org.uk/tag/policy/)
- [VICO](https://www.ataxia.org.uk/tag/vico/)
- [VO659](https://www.ataxia.org.uk/tag/vo659/)
- [ASO](https://www.ataxia.org.uk/tag/aso/)
- [NPC](https://www.ataxia.org.uk/tag/npc/)
- [Niemann-Pick Disease Type C](https://www.ataxia.org.uk/tag/niemann-pick-disease-type-c/)
- [A-T](https://www.ataxia.org.uk/tag/a-t/)
- [Ataxia-Telangiectasia](https://www.ataxia.org.uk/tag/ataxia-telangiectasia/)
- [CACNA1A](https://www.ataxia.org.uk/tag/cacna1a/)
- [Episodic ataxia](https://www.ataxia.org.uk/tag/episodic-ataxia/)
- [EA2](https://www.ataxia.org.uk/tag/ea2/)
- [clinical trial](https://www.ataxia.org.uk/tag/clinical-trial/)
- [Levacetylleucine](https://www.ataxia.org.uk/tag/levacetylleucine/)
- [4-aminopyridine](https://www.ataxia.org.uk/tag/4-aminopyridine/)
- [34-diaminopyridine](https://www.ataxia.org.uk/tag/34-diaminopyridine/)
- [Research Impact Report 2024](https://www.ataxia.org.uk/tag/research-impact-report-2024/)
- [Research Impact Report 2025](https://www.ataxia.org.uk/tag/research-impact-report-2025/)
- [Speech difficulties](https://www.ataxia.org.uk/tag/speech-difficulties/)
- [Advocacy](https://www.ataxia.org.uk/tag/advocacy/)
- [Dysarthria](https://www.ataxia.org.uk/tag/dysarthria/)
- [Speech recognition](https://www.ataxia.org.uk/tag/speech-recognition/)
- [SUNRISE-FA](https://www.ataxia.org.uk/tag/sunrise-fa/)
- [Weill Cornell medicine](https://www.ataxia.org.uk/tag/weill-cornell-medicine/)
- [CLARITY-FA](https://www.ataxia.org.uk/tag/clarity-fa/)
- [Mental health](https://www.ataxia.org.uk/tag/mental-health/)
- [Quality of life](https://www.ataxia.org.uk/tag/quality-of-life/)
- [Vitamin D](https://www.ataxia.org.uk/tag/vitamin-d/)
- [SCA29](https://www.ataxia.org.uk/tag/sca29/)
- [SCA15](https://www.ataxia.org.uk/tag/sca15/)
- [Funded project](https://www.ataxia.org.uk/tag/funded-project/)
- [UCL](https://www.ataxia.org.uk/tag/ucl/)
- [Whole Genome Sequencing](https://www.ataxia.org.uk/tag/whole-genome-sequencing/)
- [Research Impact Report 2026](https://www.ataxia.org.uk/tag/research-impact-report-2026/)
- [Exercise](https://www.ataxia.org.uk/tag/exercise/)
- [Brunel](https://www.ataxia.org.uk/tag/brunel/)
- [CA](https://www.ataxia.org.uk/tag/ca/)
- [Sheffield Paediatric Ataxia Centre](https://www.ataxia.org.uk/tag/sheffield-paediatric-ataxia-centre/)
- [Gluten-free diet](https://www.ataxia.org.uk/tag/gluten-free-diet/)

## Product categories

- [Clothing](https://www.ataxia.org.uk/product-category/clothing/)
- [Accessories](https://www.ataxia.org.uk/product-category/accessories/)
- [Information and advice](https://www.ataxia.org.uk/product-category/information-and-advice/)
- [IAAD 2022](https://www.ataxia.org.uk/product-category/accessories/iaad-2022-merch/)

## Product tags

- [IAAD2022 Merch](https://www.ataxia.org.uk/product-tag/iaad2022-merch/)