by ARSACS | Jan 8, 2026 | Latest News
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...
by ARSACS | Jan 5, 2026 | Conferences, Latest News
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...
by ARSACS | Jan 1, 2026 | Latest News
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,...
by ARSACS | Dec 10, 2025 | Latest News
The advances in preclinical studies are promising for the development of a gene therapy for ARSACS and efficacy in symptomatic mice are in progress. To know more about this ongoing research project, click here
by ARSACS | Nov 17, 2025 | Latest News
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 –...
by ARSACS | Nov 13, 2025 | Latest News
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...
by ARSACS | Nov 12, 2025 | Latest News
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...
by ARSACS | Nov 4, 2025 | Latest News
ARSACS is around the world. The first clinical case, involving a 3-year-old girl, led to research funded by the Ataxia Charlevoix-Saguenay Foundation. A Radio Canada interview with neurologists from Quebec on the subject. (Interview available in French only).
by ARSACS | Oct 21, 2025 | Latest News
Do you live with a rare disease, or are you supporting someone who does? Do you want tomake your voice heard and help advance research? Become a partner member of Rare Qc research network. Invitation
by ARSACS | Oct 17, 2025 | Latest News
The first article “Genetic Analysis of three patients from two unrelated Chinese families with autosomal recessive spastic ataxia of Charlevoix- Saguenay” published in BMC Medical Genomics in 2025. Read here. The second article is a case report...
by ARSACS | Oct 7, 2025 | Latest News
The Ataxia Charlevoix Saguenay Foundation is pleased to announce the funding of 13 innovative ARSACS projects in 2025-2026 for an investment of $1.150M. A number of these projects have been made possible through a co-funding partnership with the Richardson Trust Fund....
by ARSACS | Oct 7, 2025 | Latest News
A very interesting article published in September by the Oxford-Harrington Rare Disease Centre featuring Dr. Esther Becker who is conducting ARSACS research and Sonia Gobeil co-founder of the Ataxia Charlevoix- Saguenay. “How Patient Stories Fuel Ataxia...
by ARSACS | Sep 29, 2025 | Latest News
We are excited to share the latest updates from the Ataxia of Charlevoix-Saguenay Foundation. In this edition, you will find a newly published scientific article on ARSACS, details about the research projects funded by the Foundation for 2025–2026, and an invitation...
by ARSACS | Sep 3, 2025 | Latest News
We are pleased to present Dr. Javier Santos’ research project report, entitled “Biophysical and functional study of Sacsin Trojan fragments as a protein complementation and phenotypic rescue strategy for ARSACS.” This project was funded by the Foundation for the...
by ARSACS | Aug 26, 2025 | Latest News
People living with a ARSACS (or parent/guardian) are invited to take part in an online survey about gene therapy. 🔹 Purpose: to gather opinions that will help shape future research projects and clinical trial design⏳ Duration: ~30 minutes – anonymous🗓️ Deadline: End...
by ARSACS | Aug 19, 2025 | Latest News
For more details click here
by ARSACS | Aug 6, 2025 | Latest News
We are pleased to present Dr. Marina Crispo’s research project report (Institute Pasteur de Montevideo, Uruguay), entitled “Avatar mouse model of a new genetic variant of ARSACS detected in Uruguay”. This project was funded by the Foundation for the...
by ARSACS | Jul 31, 2025 | Latest News
We are pleased to share the scientific article entitled ” Sacsin deletion decreases cell viscoelasticity and motility in a glial cell model of autosomal recessive spastic ataxia of Charlevoix Saguenay”, based on the work of Dr. Federico Herrera and...
by ARSACS | Jul 22, 2025 | Latest News
Dr. Benoit Gentil (McGill) was recently awarded significant funding for a project aiming to develop an RNA-based therapeutic approach for ARSACS using nanoparticle technology. This project is being carried out in collaboration with QurCan Therapeutics and Genome...
by ARSACS | Jul 10, 2025 | Latest News
In this issue, discover the latest updates from the Foundation, including a newly published scientific article on ARSACS, a preview of the upcoming 2025 Diner des Producteurs, and details about our upcoming participation in the WODC Europe in Amsterdam. Read it...
