Patient Registry International ARSACS patient registry English Registre international des patients ARSACS Francais Registro internazionale dei pazienti ARSACS Italiano Registro internacional de pacientes ARSACS Español "Dîner des Producteurs" Reserve Now Invitation to the annual fundraiser for ARSACS research Invitation To ARSACS patients to join in
two international studies to identify biomarkers,
essential data to initiate treatment for ARSACS
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Several research projects

are currently funded

by the Foundation

in Canada and abroad
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Latest News

Launch of the fundraising campaign - $1.6M objective

Launch of the fundraising campaign – $1.6M objective

This year, the Diner des Producteurs, the major fundraising event for ARSACS research, did not take place due to the pandemic. The Foundation cannot resign itself to terminate medical research funding. Accordingly, the Foundation is launching today its 2020-2021 fundraising campaign with a $1.6 million objective to fund high-potential research projects as well as a clinical trial of a repurposed drug. Your help is crucial for the continuation of the Foundation and its mission. Please donate . Thank you.

Congratulations to Dr. Jacques Michaud and Dr. Guy Rouleau !

Congratulations to Dr. Jacques Michaud and Dr. Guy Rouleau !

Dr. Jacques Michaud is the recipient of the prestigious Pediatric Academic Leadership Clinician Investigator Award 2020. Dr. Guy Rouleau has been appointed to the Order of Canada for his excellence in clinical care and research.
Dr. Rouleau and Dr. Michaud are members of the Foundation’s Board of Directors.

The Foundation finances Dr. Houry's ARSACS research project

The Foundation finances Dr. Houry’s ARSACS research project

As part of its mission, the Foundation is pleased to fund Dr. Walid Houry’s ARSACS research project “Towards the Structural Determination of Sacsin”. This project is in addition to the other seven projects already funded for 2020-2021 .

Reminder : Dr. Gentil's  virtual conference on Thursday Nov 19 in French

Reminder : Dr. Gentil’s virtual conference on Thursday Nov 19 in French

Dr. Gentil’s virtual conference «La recherche de thérapies géniques et de complémentation dans le traitement de l’ARSACS » French session on Thursday Nov 19 at 1:30pm. Register now.

Next Board of Directors' meeting: Wednesday December 2, 2020

Next Board of Directors’ meeting: Wednesday December 2, 2020

The next virtual meeting of the Foundation Board of Directors will be on Wednesday December 2, 2020.

Research that heals! $700K allocated to  several ARSACS  research projects in 2020-2021

Research that heals! $700K allocated to several ARSACS research projects in 2020-2021

As part of it mission to develop a treatment for ARSACS, the Foundation is pleased to announce the research projects to be funded in 2020-2021. Over $700K, including a $50K contribution from the Richardson Fund (University of Saskatchewan), will be allocated to these projects.

The Foundation would like to thank all the applicants for their interest in the Ataxia Charlevoix-Saguenay and for the high quality of their research submissions.

Invitation to a free online presentation with Dr. Gentil on November 5th

Invitation to a free online presentation with Dr. Gentil on November 5th

Special invitation to individuals affected with ARSACS, their caregivers and health professionals to a free online presentation on November 5th, 2020. Dr. Gentil will present in layman’s terms his research project « Research on Gene and Replacement Therapies to Treat ARSACS». Register in advance.

Note: The same conference will be also in French on November 19th (see the French site to register to the French presentation). A video of the presentation will be available on the Foundation’s website.

An excellent source of information on ARSACS

An excellent source of information on ARSACS

An excellent source of information on ARSACS published in the GeneReviews.
GeneReviews is an online database containing peer-reviewed articles that describe specific diseases. It was established in 1997 by the University of Washington in the US.

Invitation to the virtual conference "L'Odyssée thérapeutique des maladies rares"

Invitation to the virtual conference “L’Odyssée thérapeutique des maladies rares”

“Comment le patient peut-il, du diagnostic à l’innovation, faciliter son odyssée thérapeutique?” Invitation to all. Note that the free visioconference, organized by the Centre de recherche Centre Hospitalier Université de Montréal and les Hospices Civils de Lyon, is in French only and will be held on November 4, 2020. Several guest speakers will share their experience. For more information concerning the program and how to register click on Program . Register now.

"It is becoming increasingly clear that in patients with ARSACS, the presence of inappropriate knee cocontractions is a major factor in mobility restrictions."

“It is becoming increasingly clear that in patients with ARSACS, the presence of inappropriate knee cocontractions is a major factor in mobility restrictions.”

According to Dr. Luc J. Hébert’s interim report , “it is becoming increasingly clear that in patients with ARSACS, the presence of inappropriate knee cocontractions is a major factor in mobility restrictions.” Dr. Hébert is the researcher responsible for the project “Caractérisation des déficiences musculaires associées aux difficultés à la marche et aux transferts chez des personnes atteintes d’ARSACS ; de la cellule à la fonction” Note: The interim report is available in French only.

Around the Lac St-Jean on an adapted bike on August 1 &2

Around the Lac St-Jean on an adapted bike on August 1 &2

Article published in the Quotidien. Nicolas Claveau, affected by ARSACS , has the intention to go around the Lac St Jean on an adapted bike to support the ARSCS research. Good luck Nicolas !

Launch of the International ARSACS Patient Registry

Launch of the International ARSACS Patient Registry

If you or a family member has received an ARSACS diagnostic, you are invited to register. It is easy and simple.
The registry is available in 4 languages English, French Spanish and in Italian. This is a way for you to support the cause.

Our Annual Fundraiser