Ataxia Magazine 215
Ataxia Magazine 215 Read More »
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
In memory of Jaina Read More »
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
Transitions (change) Read More »
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
Help shape our strategy for the next three years Read More »
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…
Virtual Annual Conference Read More »
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
Travelling with ataxia, to be continued… Read More »
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
Volunteers’ Week: Mari Akhurst Read More »
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
Volunteers’ Week: Emma Buckett Read More »
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
Volunteers’ Week: Mark Deere Read More »
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
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
Change your address with Ataxia UK Read More »
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
Ataxia in disguise Read More »
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
Ataxia doesn’t stop my love for music Read More »
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
Rare Disease Day: The curse of the Invisible Illness Read More »
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
Rare Disease Day: Dale’s story Read More »
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
The affects of ataxia Read More »
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
Rare Disease Day 2021 Read More »
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
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
My life with episodic ataxia Read More »
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
Researching the financial circumstances of Ataxia UK Friends Read More »
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
Open letter to Reata and the FDA Read More »
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
Covid-19 vaccine update Read More »
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
Book competition! (Closed) Read More »
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 »
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 »
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
Omaveloxolone (Omav) Update Read More »