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 …
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 …
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.
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 …
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 …
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 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 …
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 …
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, …
