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 case in Iran

Individuals affected by ARSACS can be found all around the world. Recently, an ARSACS case had been reported in Iran. Article published by Frontiers in Genetics in December 2020.

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Un cas ARSACS en Inde

Un groupe de chercheurs sous la direction du Dr M Suraj Menon Département de Neurologie, Government TD Medical College, Alappuzha en Inde ont évalué un patient atteint de l'ARSACS dans le sud de l'Inde. Voir article (version anglaise seulement).    

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Is ARSACS a Tauopathy?- Dr. Paul Chapple

Currently we are looking carefully at sacsin’s interaction with cytoskeletal proteins and defining the molecular mechanisms by which sacsin’s loss disrupts cytoskeletal function. This includes research examining a link between cytoskeletal disruption, caused by loss...

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Is ARSACS a Tauopathy?- Dr. Paul Chapple

Currently we are looking carefully at sacsin’s interaction with cytoskeletal proteins and defining the molecular mechanisms by which sacsin’s loss disrupts cytoskeletal function. This includes research examining a link between cytoskeletal disruption, caused by loss...

read more...

Excellente source d’information sur l’ARSACS

Une excellente source d'information concernant l'ARSACS dans le GeneReviews. GeneReviews est une base de données en ligne contenant des articles évalués par des pairs qui décrivent des maladies héréditaires spécifiques. Elle a été créée en 1997 par l'Université de...

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L’ARSACS à travers le monde

Des patients en provenance de 21 pays se sont inscrits au Registre international des patients ARSACS. L'ARSACS se retrouve à travers le monde. Voir une carte de la provenance des patients inscrits.

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A new “measuring stick” for ARSACS

Dr. Cynthia Gagnon, member of the ARSACS research team, has designed with her colleagues a new set of measurements to track the ARSACS symptoms. This new index called DSI-ARSACS will help to better assess how the disease is progressing and will provide the means to...

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You have an ARSACS research project to submit?

This is a special invitation to researchers interested in ARSACS to submit their research proposal by Friday May 22, 2020. A maximum of $100,000 for a period of one year with possibility of renewal for a second year. An application for a specific project could include...

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La Fondation participe au projet PROSPAX

La Fondation est une des 3 organisations qui représentera les patients ARSACS dans le cadre du projet "integrated multimodal progression chart in spastic ataxias" (PROSPAX). Dr Brais et Dre. Gagnon, chefs de file dans la recherche sur l'ARSACS, participeront aussi à...

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Registre international des patients ARSACS

Merci aux personnes qui ont répondu au courriel demandant de confirmer ou mettre à jour leurs données dans le Registre des patients ARSACS. Si vous n'avez pas encore eu l'occasion de répondre, veuillez envoyer un courriel à administrateur@arsacs.com pour confirmer ou...

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ARSACS International Patient Registry

Thank you to the individuals who have responded to the email sent requesting to confirm or update their data in the ARSACS Patient Registry. If you did not have a chance to respond yet, please send an email to administrator@arsacs.com to confirm or update your data....

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Past Projects

Partnerships

Project Reports

Publications

Research Tools