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.

Thank you for a memorable evening and exceptional support!
On behalf of the Charlevoix-Saguenay Ataxia Foundation, Mr. Claude Bigras and Mrs. Andrée Lafleur, honorary co-presidents, Benjamin Bruno, guest chef, and Giovanni Frascolla from Maison Tua Rita, guest producer, we warmly thank you for supporting our mission during the 17th edition of the Diner des Producteurs on November 28, 2024.
Thanks to your generosity and commitment, a record net amount of $1,500,000 was raised to support the Foundation’s research and initiatives. Your support is crucial in continuing the fight against ARSACS.
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
The Foundation is participating in a webinar on ARSACS and gene therapy as part of the ”Month of Zebruary 2025”, organized by the Quebec Rare Disease Network (RQMO).
Webinar date: February 14, 2025, at 12:00 PM
The Foundation is participating in the educational webinar series on Ataxia of Charlevoix-Saguenay, organized by the National Ataxia Foundation (NAF).
Ms. Catherine Groleau joins the Foundation’s board
The Ataxia Charlevoix-Saguenay Foundation is thrilled to welcome Mrs. Catherine Groleau to its Board of Directors. Her extensive expertise and dedication will be invaluable in advancing the Foundation’s mission.
Happy New Year 2025!

1.5 MILLION THANKS!
Thanks to your incredible generosity, this year’s Dîner des Producteurs raised a record-breaking amount of $1.5 million to support research.
A huge thank you to:
- Our honorary chairs, Mr. Bigras and Ms. Lafleur, for their inspiring leadership.
- Our generous sponsors and partners, for their invaluable support.
- Our dedicated volunteers, without whom this evening would not have been possible.
- And especially to YOU, participants and donors, for making this event a true success!
All funds raised will go directly to research, bringing us closer to concrete solutions.
Your support makes all the difference. Thank you again for your solidarity and generosity!
The Ataxia Charlevoix-Saguenay Foundation’s virtual auction is officially live!
Be among the first to explore this new way of supporting our cause while securing exclusive and unforgettable items. This initiative is part of our Dîner des producteurs, taking place on November 28, 2024, under the honorary presidency of Mr. Claude Bigras and Ms. Andrée Lafleur.
Join us today and be sure to share the link with your friends and network!
https://www.mycause.bid/ataxie
Thank you for your generosity and commitment to our cause. Together, let’s make a difference.