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...
by ARSACS | Jul 7, 2025 | Latest News
Natalie and Rachael Seals, who are personally affected by ARSACS, are starting an online support group. Upcoming Zoom meetings: Saturday 2 August at 10am Saturday 4 October at 10am Registration required to join. For details or to sign up:...
by ARSACS | Jul 2, 2025 | Latest News
The Schmahmann Laboratory (Massachusetts General Hospital Ataxia Center, Boston) is conducting a study to validate a new tool for assessing emotional aspects related to the Cerebellar Cognitive and Affective Syndrome (CCAS). Who can participate?👉 English-speaking...
by ARSACS | Jun 18, 2025 | Latest News
We are proud to announce our participation to the World Orphan Drug Congress (WODC) Europe, which will be held this October in Amsterdam. A booth will be displayed to engage with attendees and raise awareness about our mission among international stakeholders in the...
by ARSACS | Jun 5, 2025 | Latest News
We are pleased to share a review published in the journal Annals of Neurology on autosomal recessive cerebellar ataxias, including ARSACS. Read article here
