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

Interview with Sonia Gobeil, cofounder of the ARSACS Foundation

Interview with Sonia Gobeil, cofounder of the ARSACS Foundation

Interview with Sonia Gobeil providing insights on the creation of the Foundation, engagement of research partners, the importance of the patient registry and support groups. Interview was done by Jenny Krahn, University of Calgary for the 2021 Canadian Society for Molecular Biosciences conference to be held June 14-17,2021.

ARSACS research results presented at the 31st International Symposium on ALS/MND

ARSACS research results presented at the 31st International Symposium on ALS/MND

Dr. Gentil and Dr. Durham presented the results of their team’s ARSACS research at the 31st International Symposium on ALS/MND. The research, funded by the Foundation, was the work of Afrooz Dabbaghizadeh and Alexandre Paré.
31st International Symposium on ALS/MND- Theme 03 – In-vitro Experimental Models
Abstract 1 : Effects of sacsin domains, a protein mutated in a neurodegenerative disorder, on neurofilament assembly.
Abstract 2 : Role of chaperone and acetylation levels and therapeutic potential of HDAC inhibitors for Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay.

Dr. Francesca Maltecca

Summary of an article on ARSACS by Dr. Maltecca

Dr. Francesca Maltecca has submitted a paper for publication entitled Sacsin cotranslational degradation explains lack of genotype-phenotype correlation in autosomal recessive spastic ataxia of Charlevoix-Saguenay, a project that was co-financed by the foundation few years ago.

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Friendly reminder : May 28, 2021 to submit your research project

Friendly reminder : May 28, 2021 to submit your research project

Send us your ARSACS research proposal by Friday May 28, 2021. You could receive up to $100,000 for a period of one year with possibility of renewal for a second year. Application form and Appendix.

Save the date: November 4th, 2021

Save the date: November 4th, 2021

Save November 4th, 2021 for the 6th International ARSACS Symposium. The keynote speaker will be Dr. Jeremy Schmahmann from the Massachusetts General Hospital. Half-day virtual conferences, free registration, opened to all. Details to come.

Krogan Lab from UCSF to conduct ARSACS research

Krogan Lab from UCSF to conduct ARSACS research

The Foundation is funding an additional research project: “Discovery of new targets for therapeutic interventions in ARSACS disease” with Dr. Nevan Krogan, University of California San Francisco (UCSF). The one year project is funded in partnership with the UCSF Foundation, Krogan Lab in Honor of Allison Trainor. “To rapidly identify new protein targets for therapeutic interventions for ARSACS disease, we will apply unbiased mass spectrometry-based proteomics and innovative computational approaches to globally uncover the cellular signaling pathways and kinases affected by deletion of the SACS”. Read more.

Join us   #tuesdaytakeoverday - March 30th

Join us #tuesdaytakeoverday – March 30th

Action for Ally will takeover Rare Revolution Magazine’s social media to create awareness about ARSACS and find a treatment. See you on #tuesdaytakeoverday, March 30th.

A new member on the Board of Directors - Mrs. Betsy Trainor

A new member on the Board of Directors – Mrs. Betsy Trainor

The Ataxia Charlevoix-Saguenay Foundation is very pleased to announce that Mrs. Betsy Trainor has joined its Board of Directors. Mrs Trainor is a corporate attorney working for Fibertek, a high-tech company in the U.S. Furthermore, she is an author who has published several children’ books. She lives outside Washington D.C. With extensive experience in different fields, Mrs. Trainor is a great addition to the Foundation’s team.

You are not alone .... ARSACS patients all around the world

You are not alone …. ARSACS patients all around the world

Have you ever wondered where ARSACS can be found? Even though associated initially with a region in Quebec, ARSACS can be found around the world. Based on the number of patients registered in the International ARSACS Patient Registry, we have created that cool ARSACS MAP providing interesting statistics. “Historical cohort ” is defined as the number of ARSACS cases that have been reported in the scientific literature. For example for Europe, the registry would be in line with the cohort where for Canada/US the registry would be over represented.

If you are an ARSACS patient and did not have an opportunity to register, we encourage you to do it. It is easy and simple. Visit International ARSACS Patient Registry

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!

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.

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.

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.

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