Milan 2026: Scientific Conference on ARSACS

The Foundation is pleased to participate to the scientific conference entitled “Focusing on Rare Conditions: Advances, Challenges and New Horizons in ARSACS,” which will take place in Milan on September 24, 2026. Among the organisers of this unique event is ARSACS...

Six Novel SACS Mutations Expand the ARSACS Spectrum

A new study has identified six novel SACS mutations in Japan, further expanding the known spectrum of autosomal recessive spastic ataxia of Charlevoix–Saguenay (ARSACS). There is a continued momentum in the global effort to better understand ARSACS and support the...

New Stem Cell Study in ARSACS

A new research project is now underway to evaluate whether stem cell injections can alter the disease trajectory of ARSACS in Sacs knockout mice. Findings from this study are expected to emerge over the course of 2026.

Did you know that ARSACS is not limited to one region?

Thanks to our patient registry, the Ataxia Charlevoix-Saguenay Foundation is now connected with patients and families in 41 countries across the globe. From Canada to Europe, the United States and beyond, individuals affected by ARSACS are part of a growing...

Running in support of families affected by ARSACS

On November 1, 2024, Christos Scarpinato lost his mother to Autosomal Recessive Spastic Ataxia of Charlevoix–Saguenay (ARSACS), a rare and degenerative neurological disease. Two years later, he is taking on a meaningful challenge: running a marathon in her memory and...

Dimethyl Fumarate Tested in an ARSACS Mouse Model

Consult the research report by Drs. Justin Wolters and Huaxia Wang on their study of dimethyl fumarate in the ARSACS mouse model. This work was made possible through the financial support of the Ataxia Charlevoix-Saguenay Foundation. Read the report here. 

A valued ally of the Foundation

Chef Martin Picard is playing for the Ataxia Charlevoix–Saguenay Foundation during his appearance on Le Tricheur, airing from March 16 to 20, 2026. A heartfelt thank you for his commitment and support of our cause! Don’t miss the show and cheer him on with us! For...

Newsletter #6 Winter 2026 Edition

We are excited to share the latest news from the Ataxia Charlevoix–SaguenayFoundation. In this edition, we highlight 2 published scientific reports on ARSACS.We announce our 2026 Research Grants Call for Proposals, and share details aboutour upcoming Symposium in...

8th edition of the ARSACS Symposium

We are pleased to announce the 8th edition of the ARSACS Symposium, to be held on November 9, 2026, as an official satellite meeting of the International Congress for Ataxia Research (ICAR) in Atlanta. This in-person event will bring together leading researchers and...

1.4 millions raised for research

On November 27,2025 the 18th edition of the Dîner des Producteurs took place. The evening was a true success, with nearly $1.4 million raised in support of research. A special thank-you to our guest chef and winemaker: Chef Julien Royer of Odette in Singapore, as well...

World Orphan Drug Congress 2025

Last November, Charlevoix–Saguenay Ataxia Foundation was brilliantly represented at the World Orphan Drug Congress in Amsterdam. As speakers, Drs. Francesca Maltecca, Daniele De Ritis, Bart van de Warrentburg, and Sonia Gobeil shared their expertise and unwavering...

A city united behind the ARSACS cause

We would like to acknowledge the tremendous participation of the Anse Saint – Jean residents at the benefit bingo organized to support the research for children with ARSACS. As a result of their generosity, $13000 was raised. Thank you to everyone who attended,...

Virtual Auction is Back!

As part of the Diner des Producteurs 2025, an ideal opportunity to find exceptional lots while supporting ARSACS research. New this year: you can make a donation to fund directly a clinical trial for the Charlevoix Saguenay Ataxia.Every gesture counts –...

The “Charity Ball” – a great success!

The first “Charity Ball” organized by Maxine Monks in the UK on October 11 to support ARSACS research had a great success. Congratulations to Maxine and her team for organizing the event. Thank you to all the volunteers, sponsors and donors for their...

A school project to support ARSACS research

Thank you to William Harvey and his entire team for their initiative as part of a year-end project at Arvida High School last May. This fundraiser consisted of selling hot dogs and treats. Their donation of $345 is greatly appreciated and will contribute to ARSACS...