PhD and Publication from a Funded Project

by | Jun 3, 2025 | Latest News

A research article from a project funded by the Foundation in 2022–2023 has just been published. This study on cellular models of ARSACS also led to Dr. Fernanda Murtinheira successfully defending her PhD. Congrats to Drs. Fernanda and Federico Herrera for this...

New scientific publication on ARSACS

by | May 28, 2025 | Latest News

Read about this recent scientific publication on ARSACS.The research featured in this article was funded by Associazione ARSACS ODV – Italy, a foundation established by one of the members of our Board of Directors, Dr. Paolo Arrigoni.Read the article

Sonia Gobeil Interview with CheckRare

by | May 12, 2025 | Latest News

Last April, Sonia Gobeil was interviewed by CheckRare during the World Orphan Drug Congress (WODC). This is a valuable opportunity to raise awareness for ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay) and to highlight the importance of ongoing...

The Foundation at the 2025 World Orphan Drug Congress

by | May 5, 2025 | Latest News

From April 22 to 24, the Ataxia Charlevoix-Saguenay Foundation was present at the World Orphan Disease Congress (WODC), a major event gathering global leaders in the field of rare diseases and orphan drugs. We had the privilege of: Presenting the progress in the...

Foundation-Funded Project Featured at ASGCT 2025

by | Apr 22, 2025 | Latest News

A research project led by Dr. Benoit Gentil and funded by the Foundation will be presented at the American Society of Gene and Cell Therapy (ASGCT) annual meeting, a key event in the field of gene and cell therapy. In parallel, we are making the presentation video...

Dr. Simon Girard’s Research Report

by | Apr 9, 2025 | Latest News

The final report of the research project “Discovery of New ARSACS Modifier Genes in the Saguenay Founder Population” led by Dr. Simon Girard is now available. Funded by the Foundation for the 2023-2024 period, this project has provided genealogical data for 166...

Zumbathon for ARSACS: Moving for the Cause

by | Apr 1, 2025 | Latest News

A huge thank you to Ms. Annie Tardif for her outstanding commitment! On March 23, she organized a Zumbathon in honor of a family close to her with two children affected by ARSACS. All donations were given to the Foundation to support research and families impacted by...

Supporting Research: A Priority for the Foundation

by | Feb 26, 2025 | Latest News

Discover the journey of Betsy Trainor, board member of the Ataxia Charlevoix-Saguenay Foundation, and her commitment to research. Thanks to the Foundation’s funding, Dr. Schmahmann is studying an FDA-approved drug to assess its potential for ARSACS. Read the...