Ataxia UK Shropshire Support Group

25/09/2025

Looking to find out more about ataxia this IAAD? Why not book your ticket now to join us at the Ataxia UK Virtual Annual Conference on 3 and 4 October.
You'll hear about the latest research news, have a chance to put your questions to specialist neurologists, hear how others are managing their ataxia, and find out what Ataxia UK can do to support you.

To see the full programme and book your ticket, visit our website:https://ow.ly/4NfO50X1BjK

23/09/2025

23/09/2025

Ataxia UK has issued a press release today highlighting the urgent need for access to omaveloxolone (Omav), the only approved treatment for Friedreich’s ataxia (FA).

Despite MHRA approval, people in England, Wales and Northern Ireland are still waiting, while in Scotland a pathway exists for clinicians to apply for early access on a case-by-case basis.

The medicine is available for patients in the US and Europe. This inequality cannot continue.

We are calling on the Department of Health and Social Care to work with us, clinicians, and the FA community on a temporary compassionate access programme before more time is lost.

📢 Families cannot afford to wait. Action is needed now.
👉 Read the full press release here

https://www.ataxia.org.uk/wp-content/uploads/2025/09/PRESS-RELEASE-1.pdf

22/09/2025

CREATE ……… EDUCATE ……… CELEBRATE

This year, for International Ataxia Awareness Day 2025, we’re shining a spotlight on the incredible ways our community creates, educates, and celebrates:

CREATE – Share your creativity, projects, or innovations that inspire others living with ataxia.
EDUCATE – Help raise awareness and understanding by sharing knowledge, tips, or resources.
CELEBRATE – Celebrate milestones, achievements, and moments that bring joy and hope.

We want to hear your stories! Your experiences can inspire, inform, and uplift others around the world.

📢 Join the campaign by sharing your story, photo, or video on social media using . Let’s CREATE, EDUCATE, and CELEBRATE together!

Email communications@ataxia.org.uk or visit ataxiauk.org.uk

22/09/2025

Earlier this year, over 10,000 of you signed our open letter calling for early access to omaveloxolone (Omav) – the first and only approved treatment for Friedreich’s ataxia (FA).

While your voices made an impact, the response from the Department of Health and Social Care leaves many families still waiting, whereas many people across Europe are getting access to Omav and in Scotland there is a pathway for clinicians to apply for access for their patients. We cannot let this stand. That’s why Ataxia UK has now sent a second formal letter demanding urgent action: a temporary, compassionate access programme and a meeting with health authorities to secure a fair way forward.

📢 Let us raise our voices again and be heard!

👉 Read the full letter here https://bit.ly/3VZDMjY

10/09/2025

🏆 Do you know someone making a real difference in the ataxia community?

Nominations are now open for the Ataxia UK Annual Conference Awards 2025! 🎉
We’re celebrating those who go above and beyond in support, advocacy, and inspiration.

There are 3 awards available:

-Branch or Support Group Award

-Someone affected by ataxia (Ernie Heath Award)

-Someone who has the condition (Matthew Law Award)

📩 To nominate, email conference@ataxia.org.uk
with:
✔️ Their name
✔️ A few sentences about why you're nominating them

Let’s celebrate the everyday heroes of our community! 🌟

09/09/2025

Researchers identify potential new biomarker of Friedreich's ataxia

Heart problems can be a symptom of Friedreich’s ataxia (FA). In 2022, Professor Richard Festenstein of Imperial College London received a grant from Ataxia UK to generate a heart cell model in FA in order to understand why FA affects the heart.

Prof. Festenstein and his team used blood stem cells taken from people with and without FA to make heart cells in their lab. Stem cells are special cells which, under certain conditions in the laboratory, can become other types of cells. It is important to develop good models of FA so that researchers can better understand the condition and test potential treatments.

The team found that part of the mitochondria—the energy centres of cells—known as mitochondrial complex 1 (MC1) was reduced in density in this cell model.

Since then, Prof. Festenstein has gone on to receive further funding to continue his ataxia research. He has also recently published a paper looking at MC1 as a potential biomarker of FA disease progression in humans and mice.

01/09/2025

We’re excited to welcome Kyle Bryant, global ataxia advocate, founder of Ride Ataxia, and an inspirational ambassador for the FA community, to the Ataxia UK office tomorrow! 🚴✨

Kyle has helped raise over $15 million for Friedreich’s Ataxia research through his fundraising rides and motivational speaking. We look forward to learning from his incredible journey and sharing this special visit with our community. 💙

Learn more about Kyle and his work:

https://ow.ly/QKCx50WOWEN

https://ow.ly/lCLI50WOWEM

https://ow.ly/b8PM50WOWEH

19/08/2025

Celebrating my 1st year on Facebook. Thank you for your continuing support. I could never have made it without you. 🙏🤗🎉

04/08/2025

Finlay’s summer 30-mile walking challenge is in full swing!
He is walking a mile a day over the summer to raise funds for Ataxia UK.
HIs father has ataxia, and Finlay wants to raise both funds and awareness.
Finlay we are beyond honoured to have you as a member of our community.

Keep up the incredible work !!!

Want to take on your own challenge for Ataxia UK?
Get in touch: fundraising@ataxia.org.uk

26/07/2025

Disability Pride Month is more than a label—it’s about lived experiences and personal truth.
What does the word “disabled” mean to you?
Let’s talk about it 💬