Join the Fight Against ARSACS — There Is Hope Through Research
The Ataxia Charlevoix-Saguenay Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).
Research Grants Call for Proposals – 2026
The Ataxia Charlevoix-Saguenay Foundation offers:
✓ up to a maximum of $100,000 CAD per project
✓ up to $25,000 CAD to support start-up initiatives (Seed Grant)
Persons with ARSACS
You have been diagnosed with ARSACS, you are not alone. Individuals living with ARSACS are all around the world. There is hope because Research that heals!
Researchers
The Foundation supports ARSACS researchers with funding, tools, and conference support, and seeks partners for preclinical and clinical trials.
Community
The Foundation is supported entirely by private donors and volunteers. We need your support to pursue the mission. Learn different ways you can help!
ARSACS International Patient Registry
Invitation to join the ARSACS International Patient Registry if you or a family member has received a diagnostic confirming that the person has ARSACS. This invitation stands even if you have already joined another patient registry.
Latest News
Running in support of families affected by ARSACS
On November 1, 2024, Christos Scarpinato lost his mother to Autosomal Recessive Spastic Ataxia of Charlevoix–Saguenay (ARSACS), a rare and degenerative neurological disease. Two years later, he is taking on a meaningful challenge: running a marathon in her memory and…
Newsletter #6 Winter 2026 Edition
We are excited to share the latest news from the Ataxia Charlevoix–Saguenay Foundation. In this edition, we highlight 2 published scientific reports on ARSACS. We announce our 2026 Research Grants Call for Proposals, and share details about our upcoming Symposium in…
8th edition of the ARSACS Symposium
We are pleased to announce the 8th edition of the ARSACS Symposium, to be held on November 9, 2026, as an official satellite meeting of the International Congress for Ataxia Research (ICAR) in Atlanta. This in-person event will bring together leading researchers and…
Developing new approaches to treating ARSACS
Read all about Stefan Strack’s recent report on ARSACS, especially with his work successfully delivering the full-length humain Sacsin in gene therapy. Read the article
2026 Research Grants Call for Proposals
For more information :Call for Proposal To apply: Application Form
Discover the latest article from Drs. Watt & McKinney
“Alterations in the Na+/H+ Exchanger NHE6 and Glutamate Transporters may Influence Purkinje Cell Fate in ARSACS” article published recently in the Cerebellum journal. Read the full report here
Research that heals
There is HOPE
The Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).
Progress has been made over the years in identifying the source of the disorder. Your support is crucial to continue funding high potential projects as well as a clinical trial of a repurposed drug.
Connect with the ARSACS community online
Stay tuned on the latest news and development. Join the ARSACS community via the different social media Facebook, RareConnect and LinkedIn.
Ways to Help the ARSACS Community and Foundation
ARSACS is a rare disease, and you can help by becoming an advocate and raising awareness.
You can also organize fundraising activities in your community to support research and clinical trials.
Another way to contribute is by staying informed. You don’t need to be a scientist—research in other neurological diseases may lead to breakthroughs for ARSACS. If you come across relevant scientific updates, such as new treatments, clinical trials, or research developments, please share them with the ARSACS Foundation. Our team can review the information and assess its relevance.