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
1.5 MILLION THANKS!
Thanks to your incredible generosity, this year’s Dîner des Producteurs raised a record-breaking amount of $1.5 million to support research.
A huge thank you to:
- Our honorary chairs, Mr. Bigras and Ms. Lafleur, for their inspiring leadership.
- Our generous sponsors and partners, for their invaluable support.
- Our dedicated volunteers, without whom this evening would not have been possible.
- And especially to YOU, participants and donors, for making this event a true success!
All funds raised will go directly to research, bringing us closer to concrete solutions.
Your support makes all the difference. Thank you again for your solidarity and generosity!
The Ataxia Charlevoix-Saguenay Foundation’s virtual auction is officially live!
Be among the first to explore this new way of supporting our cause while securing exclusive and unforgettable items. This initiative is part of our Dîner des producteurs, taking place on November 28, 2024, under the honorary presidency of Mr. Claude Bigras and Ms. Andrée Lafleur.
Join us today and be sure to share the link with your friends and network!
https://www.mycause.bid/ataxie
Thank you for your generosity and commitment to our cause. Together, let’s make a difference.
$1.14M for Gene Therapy project for Rare Neurological Disorders
A Gene Therapy project receives $1.14M from the Canadian Institutes of Heath Research (CIHR). The project will be led by Dr. Carl Ernst from the Neuro in Montreal. Sonia Gobeil, co-founder of the Ataxia Charlevoix- Saguenay Foundation, will provide the family perspective for the researcher team. “This grant will really help us move forward with new ways to more rapidly get treatments to patients with rare disease” says Dr. Ernst. Announcement.
A Generous Contribution to Support ARSACS Research
The Charlevoix-Saguenay Ataxia Foundation is honored to receive a donation of $340,000 from the Richardson Research Trust. We extend our sincere gratitude to Mr. Lawrence and Mrs. Lucille Richardson for their generosity, which plays a vital role in driving our mission forward.
“In support of our daughter and all those affected by this neurological disease, we are pleased to contribute to ARSACS research and the preparation of a clinical trial.” – Mr. & Mrs. Richardson.
Ms. Marie-Eve Duguay is Joining the Foundation
The Ataxie Charlevoix-Saguenay Foundation is pleased to announce the arrival of Ms. Marie-Eve Duguay as Director.
With her extensive experience in the healthcare field, Marie-Eve will oversee operations while developing strategic partnerships and optimizing internal processes. She will play a key role in coordinating the Foundation’s activities.