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.

ARSACS Patient Registry to be launched

After serious reflection, the ARSACS Foundation is of the view that there is a need for an overall ARSACS patient registry. Such registry will be on an international basis and will include individuals diagnosed with ARSACS regardless of their country of residence. In...

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A message from Dr. Brais

  "The high throughput screening platform of the Institute for Research in Immunology and Cancerology (IRIC) is accelerating its screening of molecules using a model derived from fibroblasts of patients with ARSACS. This fall they screened more than 12 000...

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Un message de Dr Brais

  "La plateforme de criblage à haut débit de l’Institut de Recherche en Immunologie et Cancérologie (IRIC) accélère son criblage de molécules en utilisant un modèle dérivé de fibroblastes de malades atteints d’ARSACS. Cet automne ils ont fait un premier passage...

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Rapport du Dr Gehring

  Rapport du Dr Gehring (version anglaise seulement) "Integrated structural studies of sacsin using electron microscopy and crystallography". Un des projets de recherche financés par la Fondation.  

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Dr. Hébert ‘s project report

  report See Dr. Hébert's report ( available in French only).  "Caractérisation des déficiences musculaires associées aux difficultés à la marche et aux transferts chez des patients atteints d’ARSACS: de la cellule à la fonction" is one of the projects funded by...

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Rapport du projet de Dr Hébert

  Rapport du Dr Hébert "Caractérisation des déficiences musculaires associées aux difficultés à la marche et aux transferts chez des patients atteints d’ARSACS: de la cellule à la fonction"; un des projets de recherche financés par la Fondation.  

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$905 raised at the Zumbathon!

$ 905 raised for ARSACS research thanks to the zumba dancers. The zumbathon, organized by Catherine Morel, Elizabeth St-Louis, Charlotte Boisvert and Shanlie Théroux, took place on October 26, 2017 at UQTR. Thank you to all the dancers for their participation and to...

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905$ amassés lors du Zumbathon !

  905$ à la recherche sur L'ARSACS grâce aux danseurs de zumba . La soirée, organisée par Catherine Morel, Élizabeth St-Louis, Charlotte Boisvert et Shanlie Théroux, a eu lieu le 26 octobre 2017 à l'UQTR. Merci à tous les danseurs pour leur participation ainsi...

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“Hockeyeurs sur luge … à toute vitesse”

"Nothing stops François and Laurent, not even the Ataxia of Charlevoix-Saguenay. The two young brothers excel in sledge hockey which allows them to practice their favorite sport" Interview with Frédéric Lacroix - Couture, L' express Mont-Royal, November 2017. (French...

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Come and dance Zumba with us !

Catherine Morel, Elizabeth St-Louis, Charlotte Boisvert and Shanlie Théroux, 4 students at the Cegep and the University of Quebec in Trois-Rivières, organize a zumbathon on October 26, 2017 at the UQTR. All funds raised will be donated to the Charlevoix-Saguenay...

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Venez danser la Zumba avec nous !

  Catherine Morel, Élizabeth St-Louis, Charlotte Boisvert et Shanlie Théroux, 4 étudiantes au Cegep et  à l'Université du Québec à Trois-Rivières,  organisent un zumbathon le 26 octobre 2017 à  l'UQTR. Tous les fonds amassés seront versés à Fondation de l'Ataxie...

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Dr. Hébert ‘s final project report

  See Dr. Hébert 's  final  project  report.  ( available in French only)  " Caractérisation des déficiences, limitations d’activités et restrictions de participation ainsi que leur interrelations chez les personnes atteintes d’ataxie récessive spastique de...

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Rapport final du Dr Hébert

  Rapport final du Dr Hébert .   "Caractérisation des déficiences, limitations d’activités et restrictions de participation ainsi que leur interrelations chez les personnes atteintes d’ataxie récessive spastique de Charlevoix-Saguenay (ARSCS)" est un des projets...

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Isabelle Lessard’s PHD project

As part of her PHD project, Isabelle Lessard is working on characterizing the deficiencies and physical limitations and their impact on walking in the home for individuals  with ARSACS. See Abstract  ( available only in French).  

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ARSACS team raised $2,500 for ARSACS research

Despite the cold and the rain, the ARSACS research team  raised $2,500 on Saturday  April 22 as part of  the Scotiabank Charity Challenge Run . Special thanks to  Alanna Watt for organizing the team and to the participants and sponsors for making this event  a...

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Past Projects

Partnerships

Project Reports

Publications

Research Tools