Join Ally’s initiative in making a difference

By purchasing Ally’s special ARSACS promotion items, you not only get a fantastic product but also contribute directly to the ARSACS cause. Every item you buy goes towards supporting the ARSACS research. Visit actionforally.com to browse the collection and make...

PROSPAX Natural History Study

The PROSPAX (PROgression chart of SPAstic ataXias) project, which focuses on ARSACS and SPG7 ataxias , is a collaborative effort between neurologists across several sites throughout Europe and Canada. The overall aim is to gain a better understanding of how spastic...

ODV finances ARSACS research

The Organizzazione di volontariato (ODV) finances Dr. Roberto Giambruno’s research “Alterations of SACSIN RNA-binding properties are connected to the development of ARSACS” in 2024-2025 . ODV, a volunteer organization in Italy founded by...

Mrs. Carole Gailloux joins the Foundation’s Board

The Ataxia Charlevoix- Saguenay Foundation is pleased to announce that Mrs. Carole Gailloux has joined its Board of Directors. “Mrs Gailloux brings a wealth of experience and expertise to our team with a skill set that will undoubtedly enrich our Board strategic...

Submit your ARSACS Research Proposal

The Foundation is inviting researchers to submit their ARSACS projects. We are seeking innovative and impactful research projects that will contribute significantly towards the development of a treatment for ARSACS. New this year: “start-up financing offer” (Seed...

Dr. Marc Rivière joins the Foundation’s Board

The Ataxie Charlevoix-Saguenay Foundation is very pleased to announce that Dr. Marc Rivière has joined its board of directors. An executive with extensive experience creating and managing clinical programs, Dr. Rivière’s expertise encompasses all aspects of drug...

Dr. Gentil’s article on ARSACS in BioRvix

Dr. Benoit Gentil’s article on the functions of sacsin has been published  in preprint – “Interactors of sacsin’s DNAJ domain identify function in organellar transport and membrane composition relevant to ARSACS pathogenesis  ׀ BioRvix”....

Dr. Galatolo’s ARSACS Research Report

Research report “Retinal pigment epithelium (RPE) cell system to uncover the molecular mechanisms of ARSACS-related retinal defects” – Dr. Daniel Galatolo (IRCCS Fondazione Stella Maris, Pisa, Italy). This project was funded by the Foundation in...

Drs Herrera/Fernandes/Adams’s Research Report

“Towards glial-targeted therapies of ARSACS” final research report from the research team of Drs. Herrera and Fernandes (University of Lisbon) and Dr. Adams ( Bilkent University in Turkey). This project was funded by the Foundation in 2022-2023.

Friends coming together for a cause

During this Holiday Season, here is an inspiring video of friendship, generosity and community support for the ARSACS cause. Last Fall, Gabriel and Olivier , two childhood friends, took up the Défi Charlevoix- Saguenay and raised $15, 000 for ARSACS research....

Dr. Desnoyers joins the Foundation’s Board

The Ataxia Charlevoix-Saguenay Foundation is pleased to announce the newest member of its Board of Directors. As vice-president at Neuron23, Dr. Luc Desnoyers is leading the biomarker and diagnostics efforts to move programs from the late-stage research to clinical...

Diner des Producteurs raised $1.1 M for ARSACS!

The funds raised will play a crucial role in funding research projects and paving the way for a clinical trial. Therefore, bringing us one step closer to providing hope and relief to those affected by ARSACS. We want to express our deepest gratitude to our donors,...

Dr. Chapple’s research progress report

“Molecular rewiring in cellular models of ARSACS ” research progress report from Dr. Paul Chapple, Barts and London Queen Mary’s School of Medicine, London, UK. Report for the first year of the project financed by the Foundation.

Give for ARSACS Research this Giving Tuesday!

This Giving Tuesday, we are rallying support for ARSACS research—a cause that holds immense significance for those affected by this rare genetic condition. Your contribution, no matter the amount, can play a crucial role in funding research that brings us closer to a...

Gene Therapy – what is it?

As part of the TREAT ARCA project, a webinar was held in September 2023 to demystify the world of gene therapy!. It was designed to break down the complexities of gene therapy into easy-to-follow concepts. Discover its potential to shape the future of medicine. Gene...

ARSACS International Symposium – A Great Success!

200 registrants at the Symposium, a scientific event on ARSACS research. The discussions were dynamic and highlighted the latest advancements in research. The symposium definitely fostered collaborative thinking. The active participation, insightful contributions, and...