Action for A-T

30/10/2026

🔬💗 Exciting News! Our Latest A-T Research Study Is Underway!

We're delighted to announce the start of the Precision A-T study, an exciting new research project funded in partnership with BrAshA-T Ataxia-Telangiectasia, aefat and the Ataxia-Telangiectasia A-T Society.

The Precision A-T study could help develop personalised treatments for more children with A-T by targeting a wider range of changes in the ATM gene. Researchers also hope to make these treatments more effective and longer-lasting, helping move this promising approach closer to becoming a treatment for people with A-T.

🔗 Find out more about the Precision A-T project:
https://actionforat.org/research/precision-at/

Funding Research. Finding Hope. 💗

27/10/2026

📚🏇 100 Stories. One Incredible Cause! 💙

From incredible wins to heartbreaking near misses, 100 Punting Feats and Bad Beats is packed with unforgettable stories from the world of racing, sport and betting!

💙 Every purchase helps support Action for A-T, raising vital funds for children and families affected by Ataxia Telangiectasia (A-T).

A fantastic read for a fantastic cause!

👉 Order your copy today: https://weatherbysshop.co.uk/products/100-punting-feats-and-bad-beats

A huge thank you to Paul Jones and everyone involved! 💙

100 PUNTING FEATS AND BAD BEATS compiled by Paul Jones brings together 100 of the sharpest minds in the horseracing and gambling industries recounting their best entertaining betting tale, whether it be an incomprehensible bad beat or enlightening punting feat in aid of the children’s charity Acti...

21/10/2026

🔬 Exciting Research News from Action for A-T! ❤️

We're delighted to share the results of a recently completed research study at the University of Cambridge funded through our Sandpit Seed Funding Grant Round.

Led by Dr Ramsay Bowden, the project explored how whole genome sequencing could improve cancer diagnosis and treatment for people living with Ataxia-Telangiectasia (A-T).

The study has made important progress, developing new techniques for analysing cancer samples and laying the foundations for future research into earlier diagnosis and better treatments.

❤️ This research was only possible thanks to the generosity of our incredible donors, fundraisers and supporters. Thank you for helping us fund research and find hope!

👉 Read more about the project and its outcomes:
https://actionforat.org/research/improving-diagnosis-through-genome-sequencing/

09/10/2026

🎉 Our new Action for A-T website is LIVE! 💙

We're so excited to share our brand-new website with you!

With a fresh new look, easier navigation and inspiring stories from our A-T community, our website is designed to help you learn more about A-T, discover the work we do and see the difference your support makes.

A huge thank you to Framework Digital for bringing our vision to life, and to the amazing A-T families who generously shared their stories and photos to help make the website so special. 💙

We couldn't have done it without you!

🌐 Take a look and explore our new website: https://actionforat.org/

02/10/2026

🔬 Funding Research. Finding Hope. 💗

We're delighted to be jointly funding an exciting new research project with the Ataxia-Telangiectasia A-T Children's Project, exploring a promising approach that could one day help slow or prevent neurological decline in children living with Ataxia-Telangiectasia (A-T).

Led by Professor Paul Mathews at the Lundquist Institute, the research will investigate an advanced gene-editing technique called Prime Editing, which aims to repair faults in the ATM gene responsible for A-T.

💗 Together with the A-T Children's Project, we're investing in innovative science to bring new hope to families affected by A-T.

🔗 Discover more about this exciting research: https://actionforat.org/restoring-atm-function-to-prevent-neurological-decline-in-ataxia-telangiectasia/

30/09/2026

⛳ A fantastic day of golf in support of Action for A-T! 💗

Yesterday, 80 golfers joined us at the beautiful Royal Automobile Club, Woodcote Park for our final Action for A-T Golf Day of 2026 – and what a brilliant day it was!

Thanks to the incredible generosity of everyone who took part, supported the event and helped make it possible, we raised an amazing £15,000 net for Action for A-T. 🎉

Every pound raised will help us continue funding vital research into Ataxia-Telangiectasia (A-T), bringing us closer to better treatments and a brighter future for children and families living with this devastating condition.

Please join us in thanking our golfers, sponsors, supporters, volunteers and everyone at the RAC who helped make the day such a success. 💗

25/09/2026

This International Ataxia Awareness Day, we’re investing in hope for the future of A-T research.

We’re proud to be funding an exciting new research project in partnership with Action Medical Research, BrAshA-T Ataxia-Telangiectasia, aefat and the Ataxia-Telangiectasia A-T Society, which aims to take an important step towards a potential new treatment for Ataxia-Telangiectasia (A-T).

Led by Associate Professor Kevin Kemp at the University of Bristol, researchers will explore whether stem cells and gene therapy can be used to restore the function of the faulty ATM gene in immune cells in the body and brain.

💙 Research like this is only possible when the A-T community, researchers and charities work together.

This International Ataxia Awareness Day, please help us spread the word about A-T and the research working towards a better future for everyone affected.

🔗 Read more about the research: https://actionforat.org/stem-cells-and-gene-therapy-to-restore-atm/

18/09/2026

A truly historic milestone for the A‑T community.

Today, the U.S. Food and Drug Administration has approved AQNEURSA® (levacetylleucine) — the first and only treatment for Ataxia‑Telangiectasia anywhere in the world.

This breakthrough offers new hope to children and families living with A‑T, which until now had no approved therapy.

We celebrate this incredible achievement by and the dedicated researchers, clinicians, and families whose perseverance made it possible.

Together, we move closer to a future where A‑T no longer limits lives.

🔗 Read more: businesswire.com/news/home/20260918198606/en/IntraBio-Announces-U.S.-FDA-Approval-of-AQNEURSA-levacetylleucine-for-Ataxia-Telangiectasia

17/09/2026

🚴‍♂️⛰️ A huge congratulations to Action for A-T supporter Alan Gupwell, who took on the incredible challenge of cycling all the way to the top of Mont Ventoux!

Not only did Alan conquer this legendary climb, he also raised over £300 to support more A-T research. 💙

An amazing achievement and a fantastic way to help drive forward research for everyone affected by A-T.

👏 Please join us in saying a massive THANK YOU to Alan! We think he's a superstar...