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.
Diner des Producteurs raised $1.1 M for ARSACS!
The funds raised will play a crucial role in funding research projects and paving the way for a clinical trial. Therefore , bringing us one step closer to providing hope and relief to those affected by ARSACS.
We want to express our deepest gratitude to our donors, partners and dedicated volunteers who worked tirelessly to make this event a success. This achievement would not have been possible without each and every one of you.
(Photo by 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
A Glimmer of Hope- Interview with Sonia Gobeil
Interview with Sonia Gobeil, co-founder of the Ataxia Charlevoix- Saguenay Foundation, on the ARSACS research progress. Interview at TVA Nouvelles on May 3 is available only in French.
A $200,000 Partnership between the Foundation and NeuroSphere
The Ataxia Charlevoix Saguenay Foundation and NeuroSphere are pleased to announce a strategic and financial partnership of $200,000 to support Dr. Benoit Gentil’s research project. This partnership, described as innovative and with high potential, aligns perfectly with the respective missions of the Foundation which aims to support the development of a treatment for ARSACS and the NeuroSphere group, whose objective is to promote innovative projects in neuroscience. Communique.
Drs. Gentil and Durham’s Research Report
“Therapeutic Approaches for ARSACS” – research report from Drs. Benoit Gentil and Heather Durham (McGill University). This project was funded by the Foundation in 2022-2023.
Dr. Watt and Dr. McKinney’s Research Report
“Elucidating mechanisms underlying motor coordination rescue in a mouse model of ARSACS” research report from Dr. Watt and Dr. McKinney (McGill University). This project was funded by the Foundation in 2022-2023.
CPTA Highlights for Ataxias
Founded in 2021, Critical Path for Therapeutics for the Ataxias (CPTA) is a consortium focused on accelerating therapeutic development for Ataxias. The Ataxia Charlevoix- Saguenay Foundation is a member of the consortium. Consortium Highlights and Achievements.
Thank you Mr. Riverin and Tremblay for supporting ARSACS !
Thank you to Mr. Benoit Riverin and Mr. Jean-François Tremblay for organising a fundraiser to support ARSACS research. Their initiative raised awareness in the community and contributed to a cause that is close to our hearts. An amount of $6,150 was raised during an auction held on February 25th in Jonquière.
Thank you to all donors and to Mr. Marco Houde, Olivier Houde and Gabriel Paquet who spoke at this event. Their testimonials have been inspiring.
Photo : Funds given to the Foundation
L to R : Mr. Benoit Riverin, Sonia Gobeil from the Fondation and Mr. Jean-François Tremblay.