Who They Are
The Ataxia Charlevoix-Saguenay Foundation (ARSACS) is a Canadian charitable organization established in 2006. Operating without paid staff, it is entirely supported by volunteers and private donations. The foundation is dedicated to discovering and developing treatments for Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS), a rare neurodegenerative disorder primarily affecting individuals in Quebec’s Charlevoix and Saguenay regions. While most cases are concentrated in Quebec, ARSACS has also been identified in countries such as Japan, Turkey, Tunisia, Spain, Brazil, Poland, Italy, and Belgium
What They Do
ARSACS focuses on several key areas to advance research and support individuals affected by the disorder:
- Research Funding and Support: The foundation provides grants—up to $100,000 annually—for research projects aimed at understanding and treating ARSACS. It also offers access to research tools like Sacsin Knockout and Knock-In mouse models and induced pluripotent stem cells derived from ARSACS patients.
- Clinical Trials and Partnerships: ARSACS collaborates with researchers and pharmaceutical companies to conduct preclinical and clinical trials. For instance, it has partnered with NeuroSphere to support Dr. Benoit Gentil’s RNA-based therapeutic project.
- Patient and Community Engagement: The foundation maintains an international patient registry and encourages participation in research studies and surveys. It also organizes educational webinars and conferences, such as the International ARSACS Symposium, to foster collaboration among researchers and the community.
- Fundraising and Awareness: Funded primarily through individual donations and fundraising events, ARSACS offers various ways for supporters to contribute, including online donations, bequests, and organizing community events.