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.
LE DINER DES PRODUCTEURS 2024
You are cordially invited to the annual Diner des Producteurs 2024, a major fundraising and a pivotal event in our mission to advance research and a clinical trial for ARSACS.
Thank you for your ongoing support and belief in the Foundation’s mission to bring us one step closer to a cure.
Registration /Sponsorship / Donation form
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
Le DINER DES PRODUCTEURS 2024
10 innovative ARSACS projects for an investment of 850 000$
The Ataxia Charlevoix -Saguenay Foundation is pleased to announce the funding of 10 innovative research projects in 2024-2025. This is an investment of $850,000 aimed to understand the underlying causes of ARSACS and to develop effective treatments. Congratulations to the following 2024-2025 awardees!
Dia Internacional das Ataxias Conference in Portugal
An International Ataxia Day conference will be held in Portugal on September 25, 2024. This event is organized by Mr. Carlos Neves, Portuguese Association of Hereditary Ataxias and Mrs. Susana Reis, Podcast Ataxia e Agora. Dr. Federico Herrera, member of the ARSACS research team, will be presenting his ARSACS research. Details. Program.
S. Gobeil and B. Trainor at the Canadian Association of Genetic Counsellors Conference 2024
Sonia Gobeil (Co-founder of the Ataxia Charlevoix-Saguenay Foundation) and Betsy Trainor (Board member of the Foundation) will be part of the Patient and Advocacy Panel at the Genetic Counsellors Conference in Quebec City, September 25-28, 2024.
The complex journeys of rare disease patients will be discussed. With themes of challenges coupled with hope, the panel will discuss advocacy efforts supporting rare disease patients and the many obstacles associated with supporting research for rare diseases.
UK ATAXIA supports ARSACS research
Dr. Federico Herrera has received funding from UK Ataxia for his ARSACS research project “Towards a pharmacological model of Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS)”. Dr. Herrera is part of the ARSACS research team.
Developping gene therapy for ARSACS
Article published in the McGill Reporter regarding Dr. Benoit Gentil’s gene therapy research and the $200,000 strategic and financial partnership between the Foundation and NeuroSphere.