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.
Upcoming events
ARSACS research projects for 2021-2022 to be announced
The Foundation has received again this year several high quality ARSACS research proposals. The projects are being evaluated by the Advisory Board.
The research projects to be funded in 2021-2022 should be announced shortly. Stay tuned!
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
Invitation to the ARSACS International Symposium
Invitation to the 6th ARSACS International Symposium to be held on November 4th, 2021. Keynote speaker Dr. Schmahmann from the Massachusetts General Hospital. Half-day virtual conferences, free registration, opened to all. See Program. Please do not hesitate to share this invitation with anyone who could be interested in the latest ARSACS research. Register now .
ARSACS researchers’ article submitted for publication
“There is a tremendous amount of data that we have made publicly available, that we hope will be of great use to the community” Justin Wolter, ARSACS research team . “The ataxia protein sacsin is required for integrin trafficking and synaptic organization”
ARSACS to be part of the Compassionate Allowances Program in the USA
On August 16, 2021, Mrs Kilolo Kijakazi, acting commissioner of the United States Social Security Administration, announced that the Compassionate Allowances Program will be expanded to included ARSACS. This applies to American citizens only. Press release.
“Trying a drug that was not initially designed for ARSACS but such drug could alleviate the symptoms and therefore improve, in some ways, the life of individuals. This is where I am heading to”.
Sonia Gobeil, parent of 2 children with ARSACS and co-founder of the Foundation, shares her experience and hopes in an interview with Maxine Derksen, Hope for Ataxia – Raising Ataxia Awareness Globally
Radio station 92.5 ckaj is part of the efforts – Donation of $35,000. Thank you!
Mr. Robert Banford, General Manager of the 92.5 ckaj station in Saguenay, made an important donation of $35,000 to the Foundation to continue research and to support Mr. Nicolas Claveau in his fundraising initiatives ands sporting achievements in particular that of crossing Canada in a wheelchair to create awareness of the disease.
From left to right: Ms. Sonia Gobeil, co-founder of the Foundation, Mr. Robert Banford, Executive Director of 92.5, Mr. Nicolas Claveau, volunteer and sportsman and Ms. Claudine Tremblay of station 92.5.
ARSACS Article by researchers in Korea
“Ciliary Ganglioplegic Migraine Associated with SACS Mutation” case report published in February 2021 in the Journal of Ophthalmology and Visual Sciences.