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.
$1.250M net raised for ARSACS research at the Diner des Producteurs
To:
Mr. Marc Bédard, Honorary President,
Sponsors, Partners, Donors and Volunteers
Thank you for your support!
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
ARSACS research featured on CBC Radio
ARSACS research project, led by Drs. Mckinney ,Watt and Toscano- Marquez, was featured on CBC radio “Let’s Go” on 2022-01-20. As part of the “Understanding the Brain” segment, Rackeb Tesfaye, science columnist at CBC radio and a PHD candidate in neurosciences, provided an overview of ARSACS history and explained the latest discovery made by the McGill research team. “Let Go”
$1.250M net raised for ARSACS research at the Diner des Producteurs
” To all of you : Mr. Marc Bédard, Honorary President, sponsors, partners, donors and volunteers, it is thanks to you that the Foundation can pursue it’s mission. Thank you! ” Jean Groleau , president of the Ataxia Charlevoix-Saguenay Foundation. The Diner des Producteurs, a major fundraising event for the Foundation, was held in Montreal on December 6, 2021.
McGill ARSACS researchers team made a surprising discovery: not all zebrin-negative cells behave the same
Latest news release from McGill University, Montreal- Researchers at McGill University, lead by Drs. Alanna Watt and Anne Mckinney, have made an important step forward in understanding the cause of ARSACS. “We have shown really clearly that zebrin-negative cells in the posterior vermis were not degenerating,” Watt says. “We did not expect that. We thought eventually zebrin-negative cells in all parts of the vermis would succumb, but it’s just not what we see.” Welcome news for families affected by ARSACS. Research published in Frontiers in Cellular Neuroscience.
Dr. Pandolfo joins the Foundation’s Board
The Ataxia Charlevoix-Saguenay Foundation is pleased to announce that Dr. Massimo Pandolfo has joined its board of directors. Dr. Pandolfo is Professor of Neurology at McGill University in Montreal since January 2021. Prior, he was Professor of neurology and Director of the Laboratory of Experimental Neurology at the Université Libre de Bruxelles in Belgium.
“Our Board is fortunate to benefit from Dr. Pandolfo’s vast experience on ataxias. His expertise in clinical and genetic study of several rare neurological diseases will be very helpful to pursue our mission” said Jean Groleau, president of the Foundation.
Drs. Nethisinghe and Giunti’ s ARSACS research published
Research of Drs. Nethisinghe and Giunti, “Hsp90 Inhibition: A Promising Therapeutic Approach for ARSACS“, was published in the International Journal of Molecular Sciences in October 2021. This research was made possible thanks to the Foundation in collaboration with the University College London Hospitals.
Me Jean Groleau named Vice-President of Catalis Board of Directors
Me Jean Groleau, co-founder and president of the Fondation de l’Ataxie Charlevoix-Saguenay, is proud to join Catalis to represent the needs and challenges of people with rare diseases. Launched in 2017, CATALIS’ mandate is, among other things, to facilitate collaboration between the various actors and to accelerate the development of innovative treatments.
2008
Président d'honneur : M. L. Jacques Ménard, président du conseil d’administration de BMO Nesbitt Burns et président de BMO Groupe financier, Québec
Vignoble: Podere Castorani
Invité spécial Jarno Truli, Formula 1 Toyota driver
1000 Sherbrooke O, bur. 2100, Montréal, QC H3A 3G4