Latest News

Dr. Arrigoni joins the Foundation's Board of Directors

The Foundation is pleased to announce that Dr. Paolo Arrigoni has joined the Foundation’s Board of Directors. With his experience, Dr. Arrigoni will bring an European perspective at the Board.

Simple optical imaging technique to diagnose ARSACS

A new research has shown that a cheap non-invasive test could be used to diagnose ARSACS according to an article published recently in the Brain journal of neurology. See press release from UCL Faculty of Brain Sciences (London) and the complete research article .

A very touching testimonial from Jean François Collard

To people with ARSACS, do not to get discouraged, believe in yourself, go ahead even if it takes longer, anything is possible. It is often the mind the first barrier. In addition, I would tell parents to develop their children’autonomy as much as possible with their limitations. It will help them later”.
Letter from Jean François Collard.

"Diner des Producteurs" in the Montréal Centre Ville magazine

The “2017 Diner des Producteurs “event gets media coverage in the February issue of the Montreal Centre Ville magazine. Article

Interest in conducting research on ARSACS ?

If you are a researcher interested in ARSACS, the Ataxia of Charlevoix-Saguenay Foundation provides you with a great funding opportunity. Grant application must be received at the latest by May 25, 2018. Application form

Save the date : November 1, 2018

Do not miss the great Diner des Producteurs, the Foundation’s annual major fundraising event. Save the date : November 1,2018. Details to come.

Screening of new molecules – Working hard at IRIC! ( by Dr. Brais )

The screening of new molecules at the end of 2017 made it possible to identify other candidate molecules. The list goes on! Already a team from IRIC is investigating whether molecules can get to the brain. The teams of Dr. Brais, Dr. Watts and Dr. McKinney of McGill University are advancing in their validation of molecules on other models. Dr. Schwarz’s team at Harvard is also involved in the validation process.

Interview with Edith Savard, artist and painter

Edith Savard devotes herself to her passion: painting. She does it even though she has ARSACS. Discover this positive person and her art. Interview done by Sonia Gobeil in January 2018.

Mrs. Julie Duchesne joins the Board of the Foundation

The Foundation is very pleased to announce that Mrs. Julie E. Duchesne has joined its Board of Directors. Mrs. Duchesne, actuary, FSA, FCIA, Partner, has some 20 years of experience in the field of benefits consulting and team leadership. She is currently Health Business leader for Canada in group insurance practice at Mercer. She has also served on the board of CIFAR (Canadian Pension and Benefits Institute).

Cynthia Gagnon

Research article published in the prestigious Annals of Neurology.

The study has developed an algorithm to facilitate and improve the diagnosis of recessive ataxias, including ARSACS. Dr. Gagnon’s research team and Dr. Brais provided data on the functional abilities of people with ARSACS. This was made possible thanks to the support of the Foundation via Emerging team, the data from the first phase of this important project. It should be noted that this prestigious medical journal lists only a limited number of people among the authors. As a result, the names Dr. Gagnon and Dr. Brais are included in the RADIAL Working Group. “A Recessive Ataxia Diagnosis Algorithm for the Next Generation Sequencing Era”

Sarah's initiative raised $3,400 for ARSACS

Congratulations Sarah and thank you to all the donors for their contribution to the cause.
Sarah Blackburn’s initiative raised $3,400 for ARSACS by creating awareness among her community for the need to support ARSACS research.

ARSACS project gets grant from Italian Ministry of Health

The Italian Ministry of Health will fund the project Insight into new therapeutic preclinical strategies in Autosomal Recessive Spastic
Ataxia of Charlevoix-Saguenay type
presented by Gianni Ciofani, Smart Bio-Interfaces, Istituto Italiano di Tecnologia (IIT), Pontedera (PI)
Francesca Maltecca, Neurogenomics Unit, Ospedale San Raffaele, Milan, Italy and Filippo M. Santorelli, Molecular Medicine, IRCCS Fondazione Stella Maris, Pisa. Congratulations!
Summary of the research project.

Our Annual Fundraiser