Ataxia UK Shropshire Support Group

13/01/2026

Volunteers with ataxia and caregivers needed for research study advisory board

Ataxia UK regularly partners with researchers to provide input from people living with ataxia to their research project. We are looking for a small number of people with ataxia and caregivers to join a study advisory board. This involves attending 2 online meetings per year, no previous experience is required, and participants will be reimbursed for their time. If you are interested, please email the Ataxia UK research team on research@ataxia.org.uk with ‘Advisory Board’ as the email subject.

The advisory board will provide input on a neurostimulation study led by Dr Tim West, funded by the Royal Academy of Engineering and the Rosetrees Trust. For more information about the study please click here

https://www.ataxia.org.uk/research-news/a-new-project-studying-neurostimulation-in-ataxia/

08/01/2026

25/12/2025

Ataxia UK welcomes MHRA plans to reform the medicines regulatory framework for rare diseases.
Ataxia UK will be contributing to the consultation phase of this project set to begin in early 2026, by representing the views of people with ataxia. To read more about this in our article please click here https://www.ataxia.org.uk/research-news/mhra-publishes-plans-to-reform-medicines-regulatory-systems-for-rare-diseases/

19/12/2025

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