Ataxia Charlevoix-Saguenay Foundation

In 2006, the Foundation was created and funded the first research to be undertaken since the identification of the Ataxia gene in 2000. It was crucial to begin research in order to discover a treatment for Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).

Since its creation, the Foundation has funded several research projects related to this neurological disorder. The Foundation is a charitable organization and is supported entirely by private donations and volunteers who support the cause. 

arsacs research

Research Objectives

The main research objective of the Ataxia Charlevoix-Saguenay Foundation is to develop a treatment for ARSACS. Every year the Foundation financed several research projects in Canada and abroad. The efforts of the Foundation are concentrated currently in three main research areas:

Financing of several promising research projects with reearchers that are experts in this field.

Forming partnerships with other organizations and pharmaceutical companies to further the understanding of this disease and conduct independent research.

Conducting clinical trials

Scientific Advisory Board

All applications for research grants are evaluated by the Scientific Advisory Board of the Ataxia of Charlevoix-Saguenay Foundation according to specific criteria.

Research Grants

To further encourage and accelerate the development of a treatment for ARSACS, the Ataxia Charlevoix-Saguenay Foundation provides grants and opportunities to researchers.

This year, the call for proposals of the Ataxia of Charlevoix-Saguenay Foundation is jointly supported by the “Richardson Research Fund” to fund ARSACS research projects.

As part of this funding offer, the Ataxia Charlevoix-Saguenay Foundation in collaboration with the “Richardson Research Fund” offers up to a maximum of $100,000 CAD per project and up to $25,000 CAD per project to support start-up initiatives (Seed Grant).

Both types of grants are awarded for a 12-month period, with the possibility of renewal. For more information and to apply :  ARSACS Call for Proposals and Application Form.

ARSACS Research Projects
2026-2027

The Foundation gratefully acknowledges the generous support of the Richardson Trust Fund and Action for ARSACS Foundation USA (AFA) in helping fund the 2026–2027 ARSACS research projects.

Rapport de projet du Dr Javier Santos

Nous vous présentons le rapport du projet de recherche du Dr Javier Santos, intitulé « Biophysical and functional study of Sacsin Trojan fragments as a protein complementation and phenotypic rescue strategy for ARSACS ». Ce projet a été financé par la Fondation pour...

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Dr. Javier Santos’ Project Report

We are pleased to present Dr. Javier Santos’ research project report, entitled “Biophysical and functional study of Sacsin Trojan fragments as a protein complementation and phenotypic rescue strategy for ARSACS.” . This project was funded by the ARSACS Foundation for...

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Dr. Martina Crispo’s Research Report

We are pleased to present Dr. Marina Crispo’s research project report (Institute Pasteur de Montevideo, Uruguay), entitled "Avatar mouse model of a new genetic variant of ARSACS detected in Uruguay". . This project was funded by the ARSACS Foundation for the 2024–2025...

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Publication récente sur l’ARSACS

Nous vous partageons l'article scientifique intitulé « Sacsin deletion decreases cell viscoelasticity and motility in a glial cell model of autosomal recessive spastic ataxia of Charlevoix Saguenay », issu des travaux du Dr Federico Herrera et collaborateurs, publié...

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Recent Publication on ARSACS

We are pleased to share the scientific article entitled " Sacsin deletion decreases cell viscoelasticity and motility in a glial cell model of autosomal recessive spastic ataxia of Charlevoix Saguenay", based on the work of Dr. Federico Herrera and colleagues,...

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Recherche sur l’ARSACS et l’ARN

Dr Benoit Gentil (McGill) a récemment obtenu un financement important pour un projet qui vise à développer une approche thérapeutique pour l’ARSACS basée sur l’ARN en utilisant une technologie de nanoparticules. Ce projet est mené en collaboration avec QurCan...

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ARSACS and RNA Research

Dr. Benoit Gentil (McGill) was recently awarded significant funding for a project aiming to develop an RNA-based therapeutic approach for ARSACS using nanoparticle technology. This project is being carried out in collaboration with QurCan Therapeutics and Genome...

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Infolettre #4 – Édition Été 2025

Dans cette édition, découvrez les dernières nouvelles de la Fondation, dont un article scientifique récemment publié sur l’ARSACS, un aperçu du prochain Diner des Producteurs 2025, ainsi que des informations sur notre participation à venir au WODC Europe à Amsterdam....

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Newsletter #4 – Summer 2025 Edition

In this issue, discover the latest updates from the Foundation, including a newly published scientific article on ARSACS, a preview of the upcoming 2025 Diner des Producteurs, and details about our upcoming participation in the WODC Europe in Amsterdam. Read it now

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Nouveau groupe de soutien ARSACS

Natalie et Rachael Seals, elles-mêmes touchées par l’ARSACS, lancent un groupe de soutien en ligne. Prochaines rencontres sur Zoom : Samedi 2 août à 10h Samedi 4 octobre à 10h Inscription obligatoire pour participer. Pour vous inscrire ou en savoir plus :...

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New ARSACS Support Group

Natalie and Rachael Seals, who are personally affected by ARSACS, are starting an online support group. Upcoming Zoom meetings: Saturday 2 August at 10am Saturday 4 October at 10am Registration required to join. For details or to sign up:...

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PARTICIPEZ À UNE ÉTUDE EN LIGNE

Le Schmahmann Laboratory (Massachusetts General Hospital Ataxia Center, Boston) recrute des adultes atteints de maladies cérébelleuses pour valider un nouvel outil d’évaluation des aspects émotionnels du syndrome cognitif et affectif cérébelleux (CCAS). Qui peut...

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JOIN AN ONLINE STUDY

The Schmahmann Laboratory (Massachusetts General Hospital Ataxia Center, Boston) is conducting a study to validate a new tool for assessing emotional aspects related to the Cerebellar Cognitive and Affective Syndrome (CCAS). Who can participate?👉 English-speaking...

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PhD and Publication from a Funded Project

A research article from a project funded by the Foundation in 2022–2023 has just been published. This study on cellular models of ARSACS also led to Dr. Fernanda Murtinheira successfully defending her PhD. Congrats to Drs. Fernanda and Federico Herrera for this...

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New scientific publication on ARSACS

Read about this recent scientific publication on ARSACS.The research featured in this article was funded by Associazione ARSACS ODV – Italy, a foundation established by one of the members of our Board of Directors, Dr. Paolo Arrigoni.Read the article

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Entrevue de Sonia Gobeil avec CheckRare

Sonia Gobeil a été interviewée par CheckRare lors du World Orphan Drug Congress (WODC) en avril dernier. Une occasion précieuse de sensibiliser le public à l’ARSACS (ataxie spastique autosomique récessive de Charlevoix-Saguenay) et de souligner l’importance de la...

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Sonia Gobeil Interview with CheckRare

Last April, Sonia Gobeil was interviewed by CheckRare during the World Orphan Drug Congress (WODC). This is a valuable opportunity to raise awareness for ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay) and to highlight the importance of ongoing...

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Dr. Simon Girard’s Research Report

The final report of the research project “Discovery of New ARSACS Modifier Genes in the Saguenay Founder Population” led by Dr. Simon Girard is now available. Funded by the Foundation for the 2023-2024 period, this project has provided genealogical data for 166...

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Zumbathon for ARSACS: Moving for the Cause

A huge thank you to Ms. Annie Tardif for her outstanding commitment! On March 23, she organized a Zumbathon in honor of a family close to her with two children affected by ARSACS. All donations were given to the Foundation to support research and families impacted by...

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Webinaire ‘All about ARSACS’

13 février 2025 - Ce webinaire, animé par les Drs Nicolas Dupré et Élise Duchesne, s’inscrivait dans la série éducative sur l’ataxie organisée par la National Ataxia Foundation (NAF) et présentée par des experts du domaine. Visionnez tous les webinaires passés de la...

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1,5 MILLION DE MERCI!

Grâce à votre incroyable générosité, le Dîner des Producteurs de cette année a permis d’amasser un montant record de 1,5 million $ pour soutenir la recherche. Un immense merci à :​- Nos présidents d'honneur, M. Bigras et Mme Lafleur, pour leur leadership...

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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...

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Past Projects

Partnerships

Project Reports

Publications

Research Tools