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.

$940,000 for ARSACS research in 2022-2023!

As part of its mission, the Foundation is financing 15 teams of researchers in Quebec/Canada and internationally for a total amount of $940,000 for 2022-2023. 10 promissing projects whose objective is to discover a treatment for ARSACS. Project description.

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“Charting the neurodevelopmental stage of ARSACS (NeurodevARSACS): A cross-species longitudinal characterization of the early molecular changes in the brain, CSF and blood”- Drs Justin Wolter, Matthis Synofzik and David Mengel

It is well established in neurodegenerative diseases that early therapeutic intervention - ideally before neurodegenerative cascades begin to breakdown neuronal function - is key to the success of disease-modifying therapies. Yet we do not understand the early...

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“Charting the neurodevelopmental stage of ARSACS (NeurodevARSACS):  A cross-species longitudinal characterization of the early molecular changes in the brain, CSF and blood” – Drs. Justin Wolter, Matthis Synofzik & David Mengel

It is well established in neurodegenerative diseases that early therapeutic intervention - ideally before neurodegenerative cascades begin to breakdown neuronal function - is key to the success of disease-modifying therapies. Yet we do not understand the early...

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Thank you !

Thank you for participating in the PROSPAX surveys! There was a good response and your input will be used to develop an assessment tool to measure changes in a person living with ARSACS over time. Survey results.

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PROSPAX and TREAT-ARCA Meeting in July 2022

In July 2022, the PROSPAX and TREAT-ARCA consortia held a joint annual meeting in Berlin, Germany, including researchers, clinicians, and representatives from Euro-ataxia and the Ataxia Charlevoix-Saguenay Foundation. A fantastic opportunity for researchers around the...

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Publication de la recherche du Dr Babu

L'article du Dr Mohan Babu publié par Elsevier en septembre 2022. Dr Babu fait partie de l'équipe de chercheurs ARSACS et a reçu du financement de la Fondation pour ce projet. Elsevier est une société d'édition universitaire spécialisée dans le contenu scientifique,...

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Dr. Babu’s ARSACS article published

Dr. Mohan Babu's article was published by Elsevier in September 2022. Dr. Babu is part of the ARSACS research team and has received funding from the Foundation for this project. Elsevier is an academic publishing company specializing in scientific, technical, and...

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ARSACS around the word

30 countries are represented in the ARSACS International Patient Registry. Map of registrants. To all of you who are registered, thank you for your participation and for helping the research. The registry is an essential tool for advancing research and for clinical...

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ARSACS à travers le monde

Des personnes provenant de 30 pays sont inscrites au Registre International des Personnes Atteintes de l'ARSACS. Carte des personnes inscrites. À tous ceux qui sont inscrits , merci de votre participation et d'aider la recherche. Le registre est un outil essentiel...

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Rapport de recherche du Dr Houry

Rapport de la recherche “Structural Determination and Super Resolution Imaging of Sacsin”, projet sous la direction du Dr Walid Houry de l'Université de Toronto et financé par la Fondation en 2021-2022. ( disponible en version anglaise seulement).

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Dr. Houry’s research report

“Structural Determination and Super Resolution Imaging of Sacsin” research report under the leadership of Dr. Houry from the University of Toronto and funded by the Foundation in 2021-2022.

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Projet TREAT-ARCA

Le projet TREAT-ARCA, qui a débuté en juin 2021, est un projet de recherche préclinique axé sur deux ataxies rares : l'ARSACS et l'ataxie-COQ8A. Les objectifs sont de tester 2 médicaments réutilisés plus des nouveaux pour l'ARSACS, de tester la thérapie génétique et...

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TREAT- ARCA Research Project

The TREAT-ARCA project, which began in June 2021, is a pre-clinical research project focused on two rare ataxias: ARSACS and COQ8A-ataxia. The objectives are to test promising repurposed and novel drugs for ARSACS, to test gene therapy and identify and validate...

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“Corticospinal tract microstructural integrity and its correlation with clinical and molecular biomarkers: a profilometry MRI study to identify in-vivo biomarkers of disease severity in ARSACS”- Dr. Sirio Cocozza

Patients with autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS) encounter symptoms that affect their walking ability. Among these, they show abnormal tensing of the muscles (spasticity), which partly derives from the disruption of a bundle of fibers...

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“Corticospinal tract microstructural integrity and its correlation with clinical and molecular biomarkers: a profilometry MRI study to identify in-vivo biomarkers of disease severity in ARSACS”- Dr. Sirio Cocozza

Patients with autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS) encounter symptoms that affect their walking ability. Among these, they show abnormal tensing of the muscles (spasticity), which partly derives from the disruption of a bundle of fibers...

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PROSPAX Survey – Deadline extended to March 6

Thank you if you have completed already the PROSPAX survey #2. We still need a greater representation of people with ARSACS for the research. Therefore, the deadline has been extended to Sunday March 6. Please take few minutes to provide your insight so people with...

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PROSPAX Sondage Phase 2

Opportunité de vous faire entendre. Faites savoir aux chercheurs ce qui est important pour vous et comment vous vous sentez vivant avec la maladie. Vous n’avez pas besoin d’avoir répondu au premier sondage pour répondre à ce sondage. Un parent d'un enfant peut remplir...

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PROSPAX Phase 2 Survey

Make your voice heard. Let researchers know what is important to you and how you feel living with the condition.You do not need to have completed the first survey to fill out this survey.  A parent of a child can fill out the survey. PROSPAX is a 3 year...

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ARSACS research in Portugal

ARSACS research conducted by Dr. Federico Herrera and his team in Portugal,“Sacsin Deletion Induces Aggregation of Glial Intermediate Filaments” , published in the Cells Journal on January 16, 2022.

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ARSACS research featured on CBC Radio

ARSACS research project, led by Drs. Mckinney ,Watt and Toscano- Marquez, was featured on CBC radio "Let's Go" on 2022-01-20. As part of the "Understanding the Brain" segment, Rackeb Tesfaye, science columnist at CBC radio and a PHD candidate in neurosciences,...

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Dr. Pandolfo joins the Foundation’s Board

The Ataxia Charlevoix-Saguenay Foundation is pleased to announce that Dr. Massimo Pandolfo has joined its board of directors. Dr. Pandolfo is Professor of Neurology at McGill University in Montreal since January 2021. Prior, he was Professor of neurology and Director...

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La Fondation a besoin de votre soutien

La campagne de financement de la Fondation est en cours jusqu’à la fin de décembre. Nous avons besoin de votre soutien pour poursuivre la recherche sur l'ARSACS. Ensemble, nous pouvons travailler à l’atteinte de l’objectif d’améliorer la vie des personnes touchées par...

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The Foundation needs your support

The Foundation's fundraising campaign is underway until the end of December. We need your support to pursue our mission to finance ARSACS research. Together we can work toward the goal of making lives better for individuals affected by ARSACS. Research needs money....

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Past Projects

Partnerships

Project Reports

Publications

Research Tools