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.
$1.150M Investment in ARSACS Research
The Ataxia Charlevoix Saguenay Foundation is pleased to announce the funding of 13 innovative ARSACS projects in 2025-2026 for an investment of $1.150M. A number of these projects have been made possible through a co-funding partnership with the Richardson Trust Fund. We extend our sincere gratitude for this valuable contribution.
Congratulations to all the laureates who have been awarded funding!
For details ARSACS Projects 2025-2026 .
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
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
World Orphan Drug Congress in Amsterdam
Last November, Charlevoix–Saguenay Ataxia Foundation was brilliantly represented at the World Orphan Drug Congress in Amsterdam. As speakers, Drs. Francesca Maltecca, Daniele De Ritis, Bart van de Warrentburg, and Sonia Gobeil shared their expertise and unwavering commitment, helping to spotlight ongoing research and bring hope to individuals and families affected by this rare disease.
The Charlevoix–Saguenay Ataxia Foundation was also present with an exhibition booth, offering a valuable opportunity to meet participants, foster meaningful connections, and raise awareness of its mission on the international stage.
A city united behind the ARSACS cause
We would like to acknowledge the tremendous participation of the Anse Saint – Jean residents at the benefit bingo organized to support the research for children with ARSACS. As a result of their generosity, $13000 was raised. Thank you to everyone who attended, the volunteers and the organizers.
Gene therapy for ARSACS: preclinical studies underway
The advances in preclinical studies are promising for the development of a gene therapy for ARSACS and efficacy in symptomatic mice are in progress. To know more about this ongoing research project, click here
Virtual Auction is Back!
As part of the Diner des Producteurs 2025, an ideal opportunity to find exceptional lots while supporting ARSACS research. New this year: you can make a donation to fund directly a clinical trial for the Charlevoix Saguenay Ataxia.
Every gesture counts – Don’t miss this opportunity to give while treating yourself! Join us today and be sure to share the link with your friends and network.
https://www.mycause.bid/ataxie
Thank you for your generosity. Together we make a difference!
The “Charity Ball” – a great success!
The first “Charity Ball” organized by Maxine Monks in the UK on October 11 to support ARSACS research had a great success. Congratulations to Maxine and her team for organizing the event. Thank you to all the volunteers, sponsors and donors for their generosity who contributed £10153 (18 000$ CDN ) to the cause. The entire ARSACS community is very grateful.