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.
The Edgson family: Kathy, Kizzy and the pets Read More »
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.
BioMarin’s BMN 290 Programme: An Update for the Friedreich’s 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.
BioMarin’s BMN 290 Programme: An Update for the Friedreich’s Ataxia Community Read More »
FPE Capital Jurassic Coast 100km Walk
Check out this awesome team who tackled the gruelling walk along the Jurassic Coast.
FPE Capital Jurassic Coast 100km Walk Read More »
Disordered not Drunk: Beryl’s story
After doing a good deed and looking out for her neighbour, Beryl was left feeling deflated and upset.
Disordered not Drunk: Beryl’s story Read More »
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.
Survey seeking your advice on the treatment of sialorrhoea Read More »
Disordered not Drunk: Derek’s story
Derek has had accusations thrown at him about being drunk, but he uses this opportunity to explain what ataxia is.
Disordered not Drunk: Derek’s story Read More »
The Neurological Alliance Report: Neuro Patience
In July 2019, The Neurological Alliance published the results of the 2018/19 National Neurology Patient Experience Survey.
The Neurological Alliance Report: Neuro Patience Read More »
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.
Gene-silencing treatment approved for hereditary amyloidosis Read More »
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.
Multiple Sclerosis drug increases levels of frataxin Read More »
Disordered not drunk: Laura’s story
Laura shares with us a time at university that filled her with anger and shame.
Disordered not drunk: Laura’s story Read More »
Disordered not drunk: Dan’s story
Dan shares a story that left him feeling embarrassed and upset, and how the situation could have been helped.
Disordered not drunk: Dan’s story Read More »
Disordered not Drunk: Tara’s 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: Tara’s Story Read More »
The Big Give Christmas Challenge 2019
We’re joining the Big Give again this year to improve access to healthcare.
The Big Give Christmas Challenge 2019 Read More »
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.
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.
Research Outcomes Report 2019 Read More »
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.
Places to Change: working towards social inclusion
Kimberley has started the very important campaign ‘places to change’, here she shares the reasons behind it.
Places to Change: working towards social inclusion Read More »
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.
Accessibility changes Read More »
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.
Campaign for Friendship ID cards Read More »
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.
The Road Travelled So Far Read More »
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.
The eyes might be the windows to disease progression in FA Read More »
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).
uniQure releases new data from Spinocerebellar Ataxia Type 3 gene therapy study Read More »
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.
Mutation in RFC1 gene is likely to be common cause of late-onset ataxia Read More »
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.
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).
Ataxia Magazine 204
NHS Genomic Medicine Service, exercises for ataxia and caring for someone with ataxia.
Ataxia Magazine 204 Read More »
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 203 Read More »
