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.
2026 Research Grants Call for Proposals
For more information :Call for Proposal
To apply: Application Form
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
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 to help advance research.
On this occasion, a fundraising campaign has been launched to support efforts to better understand and treat this disease, for which there is currently no cure.
👉 Every donation and every share truly make a difference. Read here
💙 Support him and be part of this inspiring initiative! Donate
Dimethyl Fumarate Tested in an ARSACS Mouse Model
Consult the research report by Drs. Justin Wolters and Huaxia Wang on their study of dimethyl fumarate in the ARSACS mouse model. This work was made possible through the financial support of the Ataxia Charlevoix-Saguenay Foundation. Read the report here.
OdV ARSACS is supporting ARSACS research across Italy.
Once again, OdV ARSACS — a charitable organisation founded in Italy by Susanna Deluca and Dr. Paolo Arrigoni — is supporting ARSACS research across Italy.
Dr. Francesca Maltecca (Vita-Salute San Raffaele University), Dr. Davide Marangon (University of Milan), and Dr. Elena Ziviani (University of Padova) have each received funding from OdV ARSACS to advance their research on ARSACS.
Congratulations to all three researchers for their continued commitment to this important work.
A valued ally of the Foundation
Chef Martin Picard is playing for the Ataxia Charlevoix–Saguenay Foundation during his appearance on Le Tricheur, airing from March 16 to 20, 2026.
A heartfelt thank you for his commitment and support of our cause!
Don’t miss the show and cheer him on with us!
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 Symposium 2026
.