Rare Disease Day 2021
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 […]
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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
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
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Researching the financial circumstances of Ataxia UK Friends
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
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Open letter to Reata and the 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
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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
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Book competition! (Closed)
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
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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
An accessible break away! Read More »
Surviving and 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
Surviving and keep going! Read More »
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
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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,
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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
Flu jab for those with ataxia Read More »
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
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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
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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
Advice from ataxia specialists on Covid-19 Read More »
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
Webinars and Q&A 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
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