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

Still an opportunity to participate in the PROSPAX survey. Deadline extended to January 31

Still an opportunity to participate in the PROSPAX survey. Deadline extended to January 31

There is still an opportunity to complete the PROSPAX survey. The deadline has been extended to Sunday January 31, 2021. So please take five minutes of your time to have your voice heard and be well represented in the research. Thank you very much if you have already completed the survey. It is very appreciated!

Invitation to a free online presentation with Dr. Hébert on Thursday January 21, 2021

Invitation to a free online presentation with Dr. Hébert on Thursday January 21, 2021

Invitation to individuals affected with ARSACS, their caregivers and health professionals to a free online presentation on Thursday January 21, 2021, 1:30pm-2:30pm “Abnormal muscle co-contraction in the lower limbs: a factor limiting the mobility of patients with Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS)”. The research results and avenues for intervention will be presented by Dr. Hébert and Olivier Audet. See Invitation for the ZOOM link. The English conference will be recorded and posted at a later date.

Importance of balancing Sacsin in ARSACS

Importance of balancing Sacsin in ARSACS

“The importance of balancing Sacsin protein levels in ARSACS” – the article written by Dr. Ambika Tewari and edited by Larissa Nitschke was published in SCA Source.

ARSACS case in Iran

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.

"Docosahexaenoic acid in ARSACS: observations in 2 patients" - BMC Neurology

“Docosahexaenoic acid in ARSACS: observations in 2 patients” – BMC Neurology

Article Docosahexaenoic acid in ARSACS: observations in 2 patients published in BMC Neurology. The article does not necessarily reflect the views and positions of the Foundation. It engages solely the author. The Foundation does not in any way guarantee the exactitude and reliability of the information contained in this publication. The Foundation is not responsible for the use that could be made with the information contained in this article. Finally, the Foundation is not to be held responsible for any damage caused directly or indirectly by this article or with the information that is contained.

Your donation can change lives

Your donation can change lives

Help us continue research on ARSACS. Every donation counts. Donate. Thank you and Happy Holidays!

A unique opportunity to have your voice heard by researchers in the PROSPAX project

A unique opportunity to have your voice heard by researchers in the PROSPAX project

The Ataxia Charlevoix-Saguenay Foundation is one of the 3 patient advocacy organisations participating in the PROgression chart of SPAstic ataXias (PROSPAX) research project. PROPSPAX, launched in September 2020, is a novel collaborative effort between several neurologists across Canada and Europe. Project description.
The PROSPAX survey provides an unique opportunity to have your voice heard by researchers, to make sure that the questions they are trying to answer are the ones that are important to you as a person living with the condition. The PROSPAX project will focus on two conditions – ARSACS and SPG7. However, this survey is open to anyone with any type of ataxia or hereditary spastic paraplegia (HSP). Please complete the survey (maximum 5 minutes) by January 15,2021. Click on PROSPAX SURVEY.

On behalf of the PROSPAX research team, the Ataxia Charlevoix-Saguenay Foundation thanks you in advance for participating in this survey and for your important contribution to this research project.

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.

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 .

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.

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