Virtual Annual Conference
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… […]
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Travelling with ataxia, to be continued…
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
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Volunteers’ Week: Mari Akhurst
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
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Volunteers’ Week: Emma Buckett
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
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Volunteers’ Week: Mark Deere
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
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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
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
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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
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Ataxia doesn’t 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
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Rare Disease Day: The curse of the 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
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Rare Disease Day: Dale’s 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
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The affects of ataxia
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
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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
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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
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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
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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
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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