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.

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 – Spring 2025 Edition
Stay updated on the latest ARSACS research advancements, our recent events, and upcoming initiatives to drive progress. Read it now
Publication of Dr. Galatolo’s Research on ARSACS
The scientific article titled ‘Whole Blood DNA Methylation Analysis Reveals Epigenetic Changes Associated with ARSACS’, by Dr. Daniele Galatolo and his team, was published in The Cerebellum in January 2025. Read the article
Supporting Research: A Priority for the Foundation
Discover the journey of Betsy Trainor, board member of the Ataxia Charlevoix-Saguenay Foundation, and her commitment to research. Thanks to the Foundation’s funding, Dr. Schmahmann is studying an FDA-approved drug to assess its potential for ARSACS. Read the article
Charity Ball for ARSACS Research – October 11, 2025 (UK)
A Charity Ball will be held on October 11, 2025, in the UK, in support to ARSACS research. Stay tuned for more details! For inquiries, contact Maxine Monks : max1436@googlemail.com

2025 Research Call for Proposals

Newsletter – Winter 2025 Edition
Discover the latest scientific developments on ARSACS, as well as our participation in upcoming webinars and conferences. Read it now