Our Mission
The Ataxia Charlevoix-Saguenay Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).
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
Interested in doing ARSACS research ?
The Foundation supports ARSACS researchers by providing funding, research tools and supporting/ organizing conferences.
Furthermore, the Foundation is looking for partners to conduct preclinical and clinical trials.
Community
The Foundation is supported entirely by private donors and volunteers. We need your support to pursue the mission.
Different ways you can help. Get involved.
1.4 millions raised for ARSACS research
On November 27,2025, the 18th edition of the Dîner des Producteurs took place. The evening was a true success, nearly $1.4 million raised in support of ARSACS research.
A special thank-you to our guest chef and winemaker: Chef Julien Royer of Odette in Singapore, as well as Jean-Luc Colombo of Vins Jean-Luc Colombo in France.
We would also like to extend our warmest thanks to all the guests, sponsors, and donors who contributed, directly or indirectly, to making this evening an exceptional.
Photo Vincent Morreale.
Researchers & Pharmaceuticals
Apply for a grant
The Foundation provides grants and opportunities to researchers.The research grant could be as high as $100,000 for a 12 month period and could be renewed for a second year.
Research tools available
- Sacs Knock Out mouse (#033221)
- Sacs Knock In mouse (#033385)
- iPS cells derived from samples taken from people diagnosed with ARSACS (homozygous c.8844delT).
Conferences
The Foundation organizes and supports conferences such as the International ARSACS Symposium.
Preclinical and clinical trials
The Foundation is looking for partners to conduct preclinical and clinical trials. It has the expertise and the tools available.
What can I do to help the ARSACS community and the ARSACS Foundation?
ARSACS is a rare disease. You can help by becoming an ARSACS advocate and creating awareness for the cause.
You can organize fundraising activities in your community to support research and clinical trials.
Another way to help …. Be the eyes on what is going on. You do not have to be a scientist to help advance science for ARSACS. We believe that research on other neurological diseases may help research on ARSACS and eventually lead to therapies. This is the reason why we asked you to be the eyes on what is going on for other types of ataxias and other neurological diseases. In other words, if you see or read scientific material that is worth sharing and validating (outbreaks, drugs, clinical trials, fundamental research developments), please do not hesitate to transmit this information to the ARSACS Foundation. The Foundation has dedicated volunteers and can seek professional advice to confirm or infirm the relevance of the information with respect to ARSACS.
The Ataxia Charlevoix-Saguenay Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).
The Ataxia Charlevoix-Saguenay Foundation, founded in 2006, is a charitable organization federally registered with no employees and is supported entirely by private donations and volunteers
Research that heals so
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.
Latest News
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 Atlanta (USA). We are also pleased to introduce the
new Action for ARSACS Foundation.
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 experts to present the latest scientific advances and perspectives on ARSACS.
For more information and registration, please visit: ARSACS Satellite meeting.
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
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.
1.4 millions raised for research
On November 27,2025 the 18th edition of the Dîner des Producteurs took place. The evening was a true success, with nearly $1.4 million raised in support of research.
A special thank-you to our guest chef and winemaker: Chef Julien Royer of Odette in Singapore, as well as Jean-Luc Colombo of Vins Jean-Luc Colombo in France.
We would also like to extend our warmest thanks to all the guests, sponsors, and donors who contributed, directly or indirectly, to making this evening an exceptional event dedicated to philanthropy.
Photos by Vincent Morreale