Dr. Dupré and his team published research

“Recessive cerebellar and afferent Ataxias – clinical challenges and future directions”, research article by Dr. Nicolas Dupré and his team published in the Nature Reviews | Neurology journal on March 24, 2022.

ARSACS OVD finances 2 projects in Italy (80.450€)

The Organizzazione di volontariato (ODV) finances 2 ARSACS projects with the support from the Fondazione Telethon. Project details. ODV is a volunteer organisation founded by Susanna Deluca and Dr. Paolo  Arrigoni and dedicated to the ARSACS...

Watch Ally’s inspiring story

In light of Rare Disease Day, watch the inspiring story of Ally and her family. We are motivated by her courage, her strength and her determination in finding a treatment for ARSACS.

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...

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...

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.

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...

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...

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...

Great opportunity to do ARSACS research in Italy

The Organizzazione di volontariato (ODV) is offering a seed grant of 50 000€ to finance research on ARSACS in partnership with the Fondazione Telethon . This opportunity is for researchers in Italy. However, a project involving  an international  collaboration  would...