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 "Action for Ally Merchandise " an ARSACS fundraising initiative

Launch “Action for Ally Merchandise ” an ARSACS fundraising initiative

In 2020, Ally was diagnosed with ARSACS. Her family has launched Action For Ally Merchandise to raise funds for research. All proceeds will go to support the Krogan Lab at the University of California San Francisco to conduct research of the mutated gene. Please Join the Fight & Change a Life!

Dr. Mohan Babu

ARSACS article published in IScience

IScience has published an Article on ARSACS in February 2021. Dr. Mohan Babu, supported by the ARSACS Foundation, is one of the researchers who contributed to the research.

Board meeting on Thursday March 18, 2021

Board meeting on Thursday March 18, 2021

A virtual meeting of the Foundation’s Board of Directors will be held on Thursday March 18, 2021.

International Rare Disease Day : February 28th

International Rare Disease Day : February 28th

The first international Rare Disease Day was celebrated in 2008 on February 29th, a rare date which occurs only every 4 years. Since then, the international Rare Disease Day has been held every year on the last day of February. This year, several online activities will be held to raise public awareness of rare diseases. More than 300 million people worldwide are living with a rare disease.

Interested in doing research on ARSACS? Send us your proposal by May 28,2021

Interested in doing research on ARSACS? Send us your proposal by May 28,2021

As part of it’s mission, the Foundation is funding every year several research projects on ARSACS. If you are interested in contributing with a team of researchers to advance the understanding of the disease and lead to a treatment, please send us your proposal. Your project could receive up to $100,000 for a period of one year with possibility of renewal for a second year. Application form and Appendix.

Deadline: Friday May 28,2021.

Info sheet on muscles co-contraction in ARSACS patients

Info sheet on muscles co-contraction in ARSACS patients

As part of the Rare Diseases Day (February 25) organized by GRIMM, Dr. Olivier Audet will present his research findings on muscle co-contractions in ARSACS patients. Infographie (in French only).

Video of  Dr. Hébert's  conference  on abnormal muscles co-contraction in ARSACS patients

Video of Dr. Hébert’s conference on abnormal muscles co-contraction in ARSACS patients

In case you missed it, this is a opportunity to view the virtual conference held on January 21 by Dr. Luc Hébert and Olivier Audet on the abnormal muscles co-contraction in ARSACS patients and possible avenues for interventions. Virtual conference. ( Text of presentation in French only)

The Foundation, a partner in a project funded as part of the European Joint Program Rare Diseases

The Foundation, a partner in a project funded as part of the European Joint Program Rare Diseases

The Foundation is pleased to announce that it will be representing the ARSACS patients on the research project “Designing a toolbox of paradigmatic treatments for a targeted molecular medicine approach to autosomal-recessive ataxias”. The project has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575. The specific objective is the pre-clinical-research to develop effective therapies for rare diseases. It aims at designing and testing new complementary treatment strategies, including both repurposed and newly identified molecules, as well as gene therapies in two exemplary multisystemic flagship ARCAS: Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS) and COQ8A-ataxia (ARCA2). It is a 3 year project.

Celebrating Maryse's birthday by giving to ARSCS research

Celebrating Maryse’s birthday by giving to ARSCS research

Thank you to the donors who celebrated Maryse’s birthday by supporting ARSACS research!

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.

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.

Our Annual Fundraiser