Drs Wolter & Chapple’s ARSACS research published

Drs Justin Wolter and Paul Chapple’ s ARSACS research “Multi-omic profiling reveals the ataxia protein sacsinis required for integrin trafficking and synaptic organization” has been published in the Cell Reports on November 1, 2022. Furthermore, the...

$940,000 for ARSACS research in 2022-2023!

As part of its mission, the Foundation is financing 15 teams of researchers in Quebec/Canada and internationally for a total amount of $940,000 for 2022-2023. 10 promissing projects whose objective is to discover a treatment for ARSACS. Project description.

Thank you !

Thank you for participating in the PROSPAX surveys! There was a good response and your input will be used to develop an assessment tool to measure changes in a person living with ARSACS over time. Survey results.

PROSPAX and TREAT-ARCA Meeting in July 2022

In July 2022, the PROSPAX and TREAT-ARCA consortia held a joint annual meeting in Berlin, Germany, including researchers, clinicians, and representatives from Euro-ataxia and the Ataxia Charlevoix-Saguenay Foundation. A fantastic opportunity for researchers around the...

Dr. Babu’s ARSACS article published

Dr. Mohan Babu’s article was published by Elsevier in September 2022. Dr. Babu is part of the ARSACS research team and has received funding from the Foundation for this project. Elsevier is an academic publishing company specializing in scientific, technical,...

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...