ARSACS Awareness UK

12/03/2025

Newsletter – SPRING 2025 Edition
Stay updated on the latest ARSACS research advancements, our recent events, and upcoming initiatives to drive progress. Read it now :https://arsacs.com/wp-content/uploads/2025/03/ARSACS-NEWS-2-SPRING-2025.pdf

Infolettre – Édition Printemps 2025
Ne manquez pas les dernières avancées sur l’ARSACS, nos récents événements et les initiatives à venir pour faire progresser la recherche. Lisez-la maintenant :https://arsacs.com/wp-content/uploads/2025/03/ARSACS-NEWS-2-Printemps-2025.pdf
----------
Newsletter – SPRING 2025 Edition
Stay updated on the latest ARSACS research advancements, our recent events, and upcoming initiatives to drive progress. Read it now :https://arsacs.com/wp-content/uploads/2025/03/ARSACS-NEWS-2-SPRING-2025.pdf

11/03/2025

📊 Did you know?

While ARSACS affects approximately 1 in 1,500-2,000 people in Quebec's Charlevoix-Saguenay region, it's extremely rare in England with only a handful of documented cases.

This stark difference highlights why raising awareness is so crucial. Every diagnosis matters, no matter where you are. 💫

10/03/2025

🌟 Supporting ARSACS Research & Awareness UK 🌟

We are a dedicated community initiative raising awareness and funds for ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay), an ultra-rare neurodegenerative condition affecting mobility, speech, and coordination.

While we are not currently a registered charity in the UK, we work closely with and direct all fundraising proceeds to ARSACS Canada (Fondation de l'Ataxie Charlevoix-Saguenay), the world's leading research organization for ARSACS research and treatment development.

Our mission is to:
• Raise awareness of ARSACS in the UK
• Support affected families
• Fund vital research through ARSACS Canada
• Build a supportive community

Join us in making a difference! Every share, like, and donation helps bring hope to families affected by ARSACS.

For more information about ARSACS Canada, visit: Foundation/Fondation Arsacs

10/03/2025

About ARSACS Awareness UK 🌟

We are a community-led initiative dedicated to raising awareness about ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay) in the United Kingdom. While we are not currently a registered charity, we are passionate about making a difference in the lives of those affected by this rare neurodegenerative condition.

Our mission is simple: to increase understanding of ARSACS in the UK while supporting research efforts globally. All funds raised through our initiatives are donated directly to ARSACS Canada (Fondation de l'Ataxie Charlevoix-Saguenay), the world's leading research organization for ARSACS, Foundation/Fondation Arsacs.

This page is managed by families affected by ARSACS, including our daughter Olivia, who was diagnosed with the condition three years ago. We organize various fundraising events, including our upcoming Charity Ball at Shaw Hill Golf & Spa Hotel (October 11, 2025).

Join us in our journey to:
📚 Educate about ARSACS
💪 Support affected families
🔬 Fund vital research
🌍 Build a stronger community

For event information or to get involved:
📧 Contact: awareness@arsacs.uk
📞 Phone: 01257 542321

Together, we can make a difference! 💫