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.

Projet du Dr Slaven Erceg

"Cerebellar Cells Derived From Induced Pluripotent Stem Cells in 3D Culture Generated From ARSACS Patients As Faithful Disease Model" en version anglaise seulement - Rapport d'étape du projet du Dr Erceg, projet financé par la Fondation et dont un des objectifs est de...

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Update on Dr. Slaven Erceg’s project

"Cerebellar Cells Derived From Induced Pluripotent Stem Cells in 3D Culture Generated From ARSACS Patients As Faithful Disease Model" - Dr.Slaven Erceg's research project funded by the Foundation is to generate in vitro disease model by creating ARSACS...

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La recherche en temps réel

La Fondation de l'Ataxie Charlevoix-Saguenay salue et approuve l'approche innovatrice de Rachel Harding (chercheure à l'Université de Toronto) qui consiste à partager en temps réel son carnet de recherche avec la communauté de chercheurs. Comme Mme Harding, qui...

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Research in real time

The Ataxia Charlevoix-Saguenay Foundation endorses and welcomes Rachel Harding's (University of Toronto researcher) innovative approach in opening her research notebook to the research community in real time. Like Ms. Harding who is currently working on a large...

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2 new members joined the Board of Directors

The Foundation is pleased to announce that Dr. Nicolas Dupré and Dr. Jacques Michaud have accepted to be on the Board of Directors. The Foundation would like to take this opportunity to thank Dr. Jean-Pierre Bouchard and Dr. Jean Mathieu for their contribution to the...

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Care4Rare 2ième année

Care4Rare est un projet de recherche afin d’identifier des pistes thérapeutiques pour les maladies rares telles que l'ARSACS. La Fondation finance la partie ARSACS sous la direction du Dre Kym Boycott et du Dr Alex MacKenzie de l'Hôpital pour enfants de l'Est de...

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Care4Rare Year 2 Summary

Care4Rare is a research project to identify therapeutic leads for rare diseases such as ARSACS. The Foundation is financing the ARSACS portion under the leadership of Dr. Kym Boycott and Dr. Alex MacKenzie from the Children Hospital of Eastern Ontario. Year 2 Summary

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Research 2015

“The use of KO and KI mice, a human fibroblast model and Sacs mini-gene in the search of a treatment for ARSACS”– Dr. Bernard Brais Co-director of the neuromuscular group of the Montreal Neurological Institute and Hospital. “Role of neurofilaments and mitochondria in...

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Recherche 2015

“The use of KO and KI mice, a human fibroblast model and Sacs mini-gene in the search of a treatment for ARSACS”Dr. Bernard Brais Co-director of the neuromuscular group of the Montreal Neurological Institute and Hospital. “Role of neurofilaments and mitochondria in...

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Compétition E-Rare-3 2016

La Fondation est à la recherche de chercheurs/partenaires intéressés à participer à la compétition E-Rare-3 2016. La date limite pour la pré-inscription des soumissions est le 2016-02-01. Pour plus d'information, consultez E-Rare-3 Call for Proposals.

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Compétition E-Rare-3 2016

La Fondation est à la recherche de chercheurs/partenaires intéressés à participer à la compétition E-Rare-3 2016. La date limite pour la pré-inscription des soumissions est le 2016-02-01. Pour plus d'information, consultez E-Rare-3 Call for Proposals.

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Le projet ARSACS “PREPARE” retenu

Le projet "PREPARE" sous la direction du Dr Matthis Synofzik (Allemagne) a été retenu pour obtenir du financement dans le cadre de la compétition internationale "E-Rare-3 European Research Projects on Rare Diseases". Au total, 234 projets ont été soumis en février...

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ARSACS project “PREPARE” selected

The ARSACS project entitled "PREPARE" and led by Dr. Matthis Synofzik (Germany) has been selected for funding as part of the international competition E-Rare-3 European Research Projects on Rare Diseases. A total of 234 projects were submitted last February and 19...

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Rencontre avec une compagnie pharmaceutique

Une société pharmaceutique et l'équipe de recherche de l'ARSACS se sont rencontrées le 23 juin,2015 à Montréal. L'objectif de la rencontre était de discuter de la phase d'essai préclinique II actuellement en cours sur les souris ARSACS à l'Institut Douglas. Les...

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Meeting with a pharmaceutical company

On June 23, a meeting was held in Montreal between a pharmaceutical company and the ARSACS research team with respect to the outcome of the preclinical trial phase 11 currently underway on the ARSACS mice at the Douglas Institute. The complete results should be known...

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Essai thérapeutique préclinique

La préparation requise en vue d'un essai préclinique avec une molécule thérapeutique qui provient des États-Unis débutera bientôt. Cet essai se fera sur des souris ARSACS dans les laboratoires à Montréal. Il s'agira du 2ieme essai préclinique financé par la Fondation....

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Preclinical therapeutic trial

The preparation required for a preclinical trial with a therapeutic molecule coming from the United States will begin soon. This test will be done on ARSACS mice in Montreal laboratories. This will be the 2nd preclinical trial funded by the Foundation. The results of...

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Third International Symposium on ARSACS

December 26, 2014 - On November 12th and 13th,2014, The Montreal Neurological Institute and Hospital hosted the 3rd International Symposium focusing on advances in understanding ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay) in the larger context...

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La Fondation finance six nouveaux projects

Le 20 novembre,2014- La Fondation a le plaisir d'annoncer qu'elle financera les six nouveaux projets de recherche suivants pour 2014-2015: "The use of KO and KI mice, a human fibroblast model and Sacs mini-gene in the search of a treatment for ARSACS" - Bernard Brais....

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Outcome of the Board meeting

June 24, 2014. At the meeting of the Board held on 9 June in Montreal, there was discussion on the new cell model being developped and its potential use for screening large banks of therapeutic molecules. The new strategy being pursued and its first results were also...

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Dr. Paola Giunti receives research funding

The Foundation is pleased to announce that it will fund the research of Dr. Paola Giunti (ULC Institute of Neurology and National Hospital for Neurology and Neurosurgery, London, UK) under its current research funding program. Her work entitled "Design and Validation...

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Collaboration de Genzyme au projet ARSACS

L'équipe ARSACS et les représentants de Genzyme, une biotechnologie médicale dédiée aux maladies rares, se sont entendus le 17 avril 2014 à Montréal pour travailler en collaboration sur le projet de recherche ARSACS. Genzyme est une sociéte de la compagnie...

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Concours E-Rare 2 sur les maladies rares

L'équipe de chercheurs sur l'arsacs composée de canadiens et d'européens a deposé le 30 janvier dernier une pré-application pour une demande de financement dans le cadre du concours E-Rare 2 sur les maladies rares. La décision finale de financement sera rendue le 31...

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E-Rare 2 competition

The ARSACS research team of canadians and europeans has filed on January 30,2014 a pre-application to obtain financing as part of the E-Rare 2 competition on rare diseases. The final decision will be made on October 31, 2014.

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Deuxième phase de l’étude pilote

Nous avions annoncé en 2013 les résultats d'une courte étude effectuée sur les souris transgéniques ARSACS qui démontraient que le médicament administré aux souris avait amélioré leur performance physique. La seconde étape de cette étude débutera en février 2014....

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Second phase of a trial project

A short trial conducted in 2013 and consisting of administering a drug to the ARSACS transgenic mice had some encouraging results. The mice improved their physical performance. The second phase of this project will start in February 2014. This time, the drug will be...

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Short Video on ARSACS

January,2014- In a short video, Dr Brais is describing the ARSACS and the major research milestones achieved in the last five years. Please note that the audio is in French only. See it Here

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Research 2013

Second phase of a trial project February 02,2014- A short trial conducted in 2013 and consisting of administering a drug to the ARSACS transgenic mice had some encouraging results. The mice improved their physical performance. The second phase of this project will...

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Recherche 2013

Deuxième phase de l’étude pilote Le 2 février 2014 – Nous avions annoncé en 2013 les résultats d’une courte étude effectuée sur les souris transgéniques ARSACS qui démontraient que le médicament administré aux souris avait amélioré leur performance physique. La...

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Past Projects

Partnerships

Project Reports

Publications

Research Tools