Research 2026-2027

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 ARSACS Foundation in 2022-2023.

"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.

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....

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...

Major highlights of the ARSACS Symposium held in October. Thank you to Dr Justin Wolter for his dedication in providing this summary.

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,...

“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.

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...

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...

Opening remarks by Sonia Gobeil, cofounder of the Foundation

Deadline: November 23, 2023 to submit your project. The ARSACS Organizzatione Di Volontariato (ARSACS ODV) in collaboration with Telethon is financing "seed" research projects for a 12-month period with a maximum budget of €50,000. More details.

"I am pleased to have the opportunity to ensure that in every major decision the organization makes, the needs of patients and care givers will be considered. As the parent of children with a rare disease and co-founder and president of a foundation dedicated to...

The ARSACS Organizzatione Di Volontariato (ARSACS ODV) in collaboration with Telethon is pleased to announce an opportunity for researchers to work on ARSACS . The initiative aims to finance "seed" research projects for a 12-month period with a maximum budget of...

Join us on October 19 and 20 at the 7th International Symposium on ARSACS. A great opportunity to learn about the latest advancements in ARSACS research. It will be an in-person and virtual event. It is free and open to all. Registration

The Ataxia Charlevoix Saguenay Foundation is pleased to announce the funding ofsix innovative research projects in 2023-2024. Press Release.

Gabriel Paquet- Desbiens and Olivier Houde , two childhood friends, accomplished their Défi Charlevoix- Saguenay to help finance research for the Charlevoix- Saguenay Ataxia, from which Gabriel is affected. They covered 143Km by cycling or jogging last weekend. The...

A great opportunity to learn about the latest advancements in ARSACS research and to meet the ARSACS research team. You can attend this free scientific symposium either in-person or on-line.  New this year, a panel discussion with ARSACS patients, carers and partners....

“Preclinical studies in the Sacs KO mouse model of ARSACS”- research project under the leadership of Dr Stefan Strack from University of Iowa, USA

As part of a program at improving worker health, Rio Tinto et 3 business companies from Saguenay donate $2,887.50 for ARSACS research. Thank you to the donors and the organizers for their generosity. Photo from L to R, Mr. Etienne Fortin (Rio Tinto), Georges Perron...

“A mitochondrial-targeted antioxidant (MitoQ) improves motor coordination and reduces Purkinje cell death in a mouse model of ARSACS”– ARSACS research by Drs. Watt and McKinney from McGill  published in the Neurobiology of Disease journal in May, 2023. Research funded...

ARSACS research by Dr. Maltecca and her team published in the JCI insights in May, 2023. "Restoring calcium homeostasis in Purkinje cells arrests neurodegeneration and neuroinflammation in the ARSACS mouse model"

Join us for an unique opportunity to learn about the latest advancements in ARSACS research. As an accredited satellite meeting of the 2023 World Congress of Neurology (WCN), the ARSACS Symposium will be held immediately following the WCN on October 19 -20 in...

Summary of the progression report for the project "Unravelling defective trans-synaptic signaling in ARSACS” under the leadership of Dr. Francesca Maltecca, a research funded by the Foundation in 2021-2022.

The International Congress for Ataxia Research (ICAR) and the Ataxia Global Initiative (AGI) were held between November 1st – 4th 2022 in Dallas, Texas, USA. In order to become ready for clinical trials, it is important that outcomes can measure the progression of...

Mid term report for the research project by Drs. Federico Herrera (University of Lisbon), Adelaide Fernandes (University of Lisbon) and Michelle Adams (Bilken University, Turkey). This project  is funded by the Foundation in 2022-2023. English version and also in...

ARSACS research, conducted by Dr. Dupré and his team from the CHU de Québec and Laval University, was published in the Stem Cells International Journal on April 15, 2023. "In Vitro Characterization of Motor Neurons and Purkinje Cells Differentiated from Induced...

"Creating an Open Science Repository of ARSACS hiPSCs" - a report on the progression of the project under the leadership of Dr. Nicolas Dupré, research funded by the Foundation in 2020-2021.

In November 2022, Ataxia UK, the National Ataxia Foundation (NAF), and the Friedreich’s Ataxia Research Alliance (FARA) co-hosted the International Congress for Ataxia Research (ICAR) in Dallas, Texas, USA, one of the largest gatherings of ataxia researchers to date....

Dr. Paul Chapple's research article "AlphaFold predicted structure of the Hsp90-like domains of the neurodegeneration linked protein Sacsin reveals key residues for ATPase activity" was published in Frontiers in Molecular Biosciences in January 2023. The research team...

Gabriel Paquet Desbiens and Olivier Houde launched a huge challenge to raise funds for the Foundation to pursue its mission. These two childhood friends will cycle or run from Baie St-Paul to Ville de la Baie in three days starting September 15. Gabriel is affected by...

The Foundation is inviting you to send your research proposal. The research grant could be as high as $100,000 for a 12-month period and with possibility for renewal. The Scientific Advisory Board of the Foundation will evaluate each application. Call for Proposal,...

As part of the Sami Fruits pour les Petits Foundation 2022 Gala, Mr. Flavio Condo, director of the Foundation, presented on February 8 a $50,000 check to Mrs. Sonia Gobeil from the Ataxia Charlevoix-Saguenay Foundation. This amount will directly contribute to the...

“Synchrotron Light provides the first clues that ARSACS might involve an altered metallome” according to the research results of Dr. Graham George and his team. This research project entitled “Understanding the role of Metals in ARSACS” was funded jointly by the...

On behalf of the persons living with ARSACS, their families and the Foundation, thank you to all of you for your generosity : Mr. Vincent Chiara, Honorary president, sponsors, partners, donors and volunteers. With your support, the Foundation can pursue its mission to...