Ataxia UK Shropshire Support Group

30/11/2025

This Big Give, your donation fuels life-changing research, supports people living with ataxia, and pushes for fair access to treatments across the UK. Give on 2nd December and make double the impact. https://www.ataxia.org.uk/tbg25/

11/11/2025

Have you seen the latest research news in the ataxias?

From pharmacuetical updates to interviews with clinicians and specialists, you can find this on our website. To do this please click the link in our bio at the top of this page and then select 'Ataxia Research - Ataxia UK'.

07/11/2025

The Big Ataxia Cake Bake 2025 kicked off on the 1st of November. Join NOW and sign up: fundraising@ataxia.org.uk to get involved.

07/11/2025

Georgia Hart, diagnosed with Friedreich’s Ataxia at 15, has spoken out about the urgent need for access to Omaveloxolone (OMAV) on the NHS. Her story was featured on ITV, highlighting the impact of this rare degenerative condition and the hope this treatment could bring.

📺 Watch the full interview here: https://www.itv.com/watch/news/calls-for-drug-which-slows-rare-degenerative-condition-to-be-made-available-on-nhs/pjsg53c

🩵 Share Georgia’s story and help raise awareness for fair access to life-changing treatments.

05/11/2025

05/11/2025

A pivotal moment for our community 💙

Today in Parliament, MP Jonathan Brash raised the issue of access to Omaveloxolone (OMAV) for people with Friedreich’s ataxia — calling on the government to meet with Ataxia UK and take urgent action.

We’ve been asking for this meeting, and we’re encouraged by the Deputy Prime Minister’s commitment to arrange it.

This is an important step forward — and a testament to the power of persistence, advocacy, and the courage of our community

Together, we’ll keep pushing for fair access to life-changing treatment.

Watch the full video on our YouTube channel
https://youtu.be/wWwlZZo22rU

🩵

24/10/2025

21/10/2025

Our next All About Ataxia session will be held on Wednesday 26th November from 10:00am to 14:00pm!

This is your chance to share your experience with likeminded individuals and hear from healthcare professionals about how to manage the condition.

There are a limited number of places for this event, so don’t delay in registering here: https://bit.ly/46PDsHw

18/10/2025

We’re thrilled to share our 2025 National Ataxia Awareness Day Resolution (S.Res. 447) passed the U.S. Senate with unanimous consent! This resolution, led by Senator Cindy Hyde-Smith (MS) and co-sponsored by Senators Murphy (CT) and Capito (WV), designates September 25, 2025, as National Ataxia Awareness Day, helping to elevate national recognition and understanding of Ataxia.

Each year, FARA and NAF, along with dedicated advocates, work with members of Congress to make this possible. We are deeply grateful to Senator Hyde-Smith for her leadership and to Senators Murphy and Capito who supported this important resolution. This annual designation is an important step toward building the awareness needed to improve the lives of those affected by Ataxia and accelerate progress toward treatments and a cure.

View resolution: https://www.congress.gov/bill/119th-congress/senate-resolution/447

07/10/2025

GNR 2026 We want you to be part of one of the most historic half marathons in the UK, join at the Great North Run 2026.

September 13th, 2026. Be there. Represent Ataxia. Run for good. Run for a cure.

To sign up email fundraising@ataxia.org.uk

04/10/2025

A heartfelt thank you to everyone who joined us — attendees, speakers, and supporters. Your engagement, curiosity, and energy made this event truly special. 🙌

04/10/2025

Day 2 of the Virtual Annual Conference 2025 has begun!

Join us today for more insights, expert talks, and live discussions. Let’s keep the conversation going and carry the fire forward! 🔥