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
Thank you Mr. Riverin and Tremblay for supporting ARSACS !
Thank you to Mr. Benoit Riverin and Mr. Jean-François Tremblay for organising a fundraiser to support ARSACS research. Their initiative raised awareness in the community and contributed to a cause that is close to our hearts. An amount of $6,150 was raised during an auction held on February 25th in Jonquière.
Thank you to all donors and to Mr. Marco Houde, Olivier Houde and Gabriel Paquet who spoke at this event. Their testimonials have been inspiring.
Photo : Funds given to the Foundation
L to R : Mr. Benoit Riverin, Sonia Gobeil from the Fondation and Mr. Jean-François Tremblay.
An exercise program for individuals affected by ARSACS
The Foundation and the GRIMN research team is pleased to introduce an exercise program tailored specifically for individuals affected by ARSACS. According to the medical community, an exercise program developed according to the person’s capabilities can improve the physical condition.
Before starting the program , it is crucial to undergo an assessment conducted by a qualified physiotherapist. The first part of the document provides the physiotherapist with the procedures for the evaluation and assignment of the initial level of difficulty of the exercises. The exercise program is divided into 3 areas (sitting balance, standing balance and sitting-standing transfer) with photos and videos.
The document will open in French but the reader can select the language on the right side of the screen (view the program either in French or English). EXERCISE PROGRAM
Omaveloxolone being tested on ARSACS mouse – Drs Schmahmann and Lin ‘ research project
This project is jointly funded by the Ataxia Charlevoix- Saguenay Foundation and the Massachusetts General ARSACS Fundraiser, fund created by families in the USA. Recent studies and clinical trials have demonstrated that omaveloxolone (brand name Skyclarys) can improve clinical symptoms in Friedreich’s ataxia. Drs. Schmahmann and Lin from Harvard University will administer Skyclarys to a mouse model of ARSACS and investigate whether Skyclarys can change the disease course in these mice. We believe the findings of the proposed study will be critical in determining whether omaveloxolone is appropriate for clinical trials in ARSACS.
Join Ally’s initiative in making a difference
By purchasing Ally’s special ARSACS promotion items, you not only get a fantastic product but also contribute directly to the ARSACS cause. Every item you buy goes towards supporting the ARSACS research. Visit actionforally.com to browse the collection and make a purchase today.
PROSPAX Natural History Study
The PROSPAX (PROgression chart of SPAstic ataXias) project, which focuses on ARSACS and SPG7 ataxias , is a collaborative effort between neurologists across several sites throughout Europe and Canada. The overall aim is to gain a better understanding of how spastic ataxias progress over time to prepare well-designed treatment trials for these conditions . This is called ‘trial-readiness’. The Foundation is the Patient Advocacy Organisation on that project. More details .
ODV finances ARSACS research
The Organizzazione di volontariato (ODV) finances Dr. Roberto Giambruno’s research “Alterations of SACSIN RNA-binding properties are connected to the development of ARSACS” in 2024-2025 .
ODV, a volunteer organization in Italy founded by Susanna Deluca and Dr. Paolo Arrigoni, a member of the Foundation’s Board, is dedicated to the ARSACS cause. Fondazione Telethon is an Italian non-profit organization which finances scientific research projects on rare diseases.