ARSACS around the word

30 countries are represented in the ARSACS International Patient Registry. Map of registrants. To all of you who are registered, thank you for your participation and for helping the research. The registry is an essential tool for advancing research and for clinical...

Dr. Houry’s research report

“Structural Determination and Super Resolution Imaging of Sacsin” research report under the leadership of Dr. Houry from the University of Toronto and funded by the Foundation in 2021-2022.

TREAT- ARCA Research Project

The TREAT-ARCA project, which began in June 2021, is a pre-clinical research project focused on two rare ataxias: ARSACS and COQ8A-ataxia. The objectives are to test promising repurposed and novel drugs for ARSACS, to test gene therapy and identify and validate...

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...