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
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)
Dr. Chapple’s research progress report
“Molecular rewiring in cellular models of ARSACS ” research progress report from Dr. Paul Chapple, Barts and London Queen Mary’s School of Medicine, London, UK. Report for the first year of the project financed by the Foundation.
Give for ARSACS Research this Giving Tuesday!
This Giving Tuesday, we are rallying support for ARSACS research—a cause that holds immense significance for those affected by this rare genetic condition. Your contribution, no matter the amount, can play a crucial role in funding research that brings us closer to a clinical trial and finding a treatment. By supporting ARSACS research, we are investing in hope and progress. Join us in making a difference. To donate please visit Donate now.
Thank you for your contribution.
Gene Therapy – what is it?
As part of the TREAT ARCA project, a webinar was held in September 2023 to demystify the world of gene therapy!. It was designed to break down the complexities of gene therapy into easy-to-follow concepts. Discover its potential to shape the future of medicine. Gene Therapy webinar.
ARSACS International Symposium – A Great Success!
200 registrants at the Symposium, a scientific event on ARSACS research. The discussions were dynamic and highlighted the latest advancements in research. The symposium definitely fostered collaborative thinking. The active participation, insightful contributions, and enthusiasm made the event truly exceptional. “Thank you to all the researchers, neurologists, patients and their families, sponsors and the public who participated and worked towards improving the well-being of people affected by ARSACS. Special thanks to the Neuro for its valuable support in organizing this event” Sonia Gobeil, co founder of the Foundation . View the recordings of the event: ARSACS Symposium Oct 19, Oct 20 am, Oct 20 pm. Some presentations.
2 more weeks to submit your research project
Deadline: November 23, 2023 to submit your project. The ARSACS Organizzatione Di Volontariato (ARSACS ODV) in collaboration with Telethon is financing “seed” research projects for a 12-month period with a maximum budget of €50,000. More details.