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
by ARSACS | 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...
by ARSACS | 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
by ARSACS | May 12, 2025 | Latest News
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by ARSACS | 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...
