Latest News

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.

Dr. Bernard Brais

A message from Dr. Brais


“The high throughput screening platform of the Institute for Research in Immunology and Cancerology (IRIC) is accelerating its screening of molecules using a model derived from fibroblasts of patients with ARSACS. This fall they screened more than 12 000 molecules tested! The validations will follow in early 2018. Because the research is healing! Merry Christmas”.

Dr. McKinney & Dr. Watt team report


Summary of progress made by Dr. McKinney & Dr. Watt’s research team on ARSACS, a project funded by the Foundation.


Let's all help Sarah with her fundraising for ARSACS


“To my colleagues, friends and family,
I am asking you to raise money for a cause that is close to my heart, but also to make you aware of this disease, autosomal recessive spastic ataxia Charlevoix-Saguenay, which affects my nephew and my niece. The money raised will be donated to the Charlevoix-Saguenay Ataxia Foundation. It gives all people with the disease and their families hope and hope to find and develop treatment for this disease.
Thank you in advance for your generosity. For my two loves, Maxine Blackburn, 6 years old and Lennox Blackburn, 4 years old.
Aunt Sarah “

Sarah Blackburn

Update from Dr. Durham's lab


Latest update from Dr. Durham and Dr. Benoit, researchers working on ARSACS.


Dr Kalle Gehring

Dr. Gehring progress report

See Dr. Gehring’s progress report “Integrated structural studies of sacsin using electron microscopy and crystallography”. This is one of the projects funded by the Foundation.


Cashman Kadri's feasibility study presented at Laval University


Joseph-Émile Cashman Kadri, research student working with Dr. Hébert on an ARSACS project, presented the results of his study at the students’ conference of the 2017 summer fellows of the Faculty of Medicine of Laval University.

According to Dr. Hébert, “The results of this feasibility study are very interesting since they demonstrate the possibility of acquiring EMG data on muscle activation profiles in people with ARSACS. The preliminary data are also very interesting because they go in the direction of our research hypotheses that the presence of abnormally high co-contractions in the antagonistic muscles in people with ARSACS could explain the mobility difficulties. It must now be demonstrated in a larger cohort of patients (current project funded by the Foundation) and try to better understand why these deficiencies are present in order to better treat them (next step)”.


Dr. Luc J. Hébert

Dr. Hébert 's project report

See Dr. Hébert’s report ( available in French only).  “Caractérisation des déficiences musculaires associées aux difficultés à la marche et aux transferts chez des patients atteints d’ARSACS: de la cellule à la fonction” is one of the projects funded by the Foundation.


$905 raised at the Zumbathon!

$ 905 raised for ARSACS research thanks to the zumba dancers. The zumbathon, organized by Catherine Morel, Elizabeth St-Louis, Charlotte Boisvert and Shanlie Théroux, took place on October 26, 2017 at UQTR. Thank you to all the dancers for their participation and to the organizers of the event. Photos of the evening.


"Hockeyeurs sur luge … à toute vitesse"

“Nothing stops François and Laurent, not even the Ataxia of Charlevoix-Saguenay. The two young brothers excel in sledge hockey which allows them to practice their favorite sport” Interview with Frédéric Lacroix – Couture, L’ express Mont-Royal, November 2017. (French version only).

Dr. Bernard Brais

Dr. Brais named "Personality of the week"

Dr. Bernard Brais, a key member of the ARSACS research team since the beginning, has been named the “Personality of the week” by La Presse newspaper.
Interview by Marie-Claude Lortie from La Presse (in French only).

The "Diner des Producteurs " raised $1.2 M for ARSACS

On October 26th, the 11th edition of the “Diner des Producteurs ” was held under the honorary presidency of Mr. Jean-Guy Desjardins, Fiera Capital. A record net amount of $ 1.2M was raised. Thank you to all those who contributed to the success of this unique evening and whose donations support medical research.

Next Board Meeting on December 4th

The next meeting of the Board of Directors of the Foundation Ataxia Charlevoix- Saguenay will be held on Monday December 4,2017.

"GO FORTH AND DON'T LET ANYONE STOP US " advises Marie-Claude Desormiers

Marie-Claude Desormiers, suffering from ARSACS, gave an interview in October to Sonia Gobeil of the Charlevoix-Saguenay Ataxia Foundation. Interview with Marie-Claude, a courageous and determined person.

ARSACS research making progress

Research on ARSACS is making progress. 2017 is the first year where therapeutic breakthroughs for this disease are emerging.
Update report prepared by Dr. Bernard Brais.

Our Annual Fundraiser