Our Mission

The Ataxia Charlevoix-Saguenay Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).

Persons with ARSACS

You have been diagnosed with ARSACS, you are not alone. Individuals living with ARSACS are all around the world.

There is hope because Research that heals!

Researchers

Interested in doing ARSACS research ?

The Foundation supports ARSACS researchers by providing funding, research tools and supporting/ organizing conferences.

Furthermore, the Foundation is looking for partners to conduct preclinical and clinical trials.

Community

The Foundation is supported entirely by private donors and volunteers. We need your support to pursue the mission. 

Different ways you can help. Get involved. 

Your voice is very important. Make your voice heard by participating in ARSACS research. 

Connect with Other ARSACS Patients

ARSACS International Patient Registry

Researchers & Pharmaceuticals

Apply for a grant

 The Foundation provides grants and opportunities to researchers.The research grant could be as high as $100,000 for a 12 month period and could be renewed for a second year.

Research tools available

  • Sacs Knock Out mouse (#033221)
  • Sacs Knock In mouse (#033385)
  • iPS cells derived from samples taken from people diagnosed with ARSACS (homozygous c.8844delT). 

 

Conferences

The Foundation organizes and supports conferences such as the International ARSACS Symposium.

Preclinical and clinical trials

The Foundation is looking for partners  to conduct preclinical and clinical trials. It has the expertise and the tools available.

What can I do to help the ARSACS community and the ARSACS Foundation?

ARSACS is a rare disease. You can help by becoming an ARSACS advocate and creating awareness for the cause.

You can organize fundraising activities in your community to support research and clinical trials.

Another way to help ….  Be the eyes on what is going on. You do not have to be a scientist to help advance science for ARSACS. We believe that research on other neurological diseases may help research on ARSACS and eventually lead to therapies. This is the reason why we asked you to be the eyes on what is going on for other types of ataxias and other neurological diseases. In other words, if you see or read scientific material that is worth sharing and validating (outbreaks, drugs, clinical trials, fundamental research developments), please do not hesitate to transmit this information to the ARSACS Foundation. The Foundation has dedicated volunteers and can seek professional advice to confirm or infirm the relevance of the information with respect to ARSACS.

The Ataxia Charlevoix-Saguenay Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).

The Ataxia Charlevoix-Saguenay Foundation, founded in 2006, is a charitable organization federally registered with no employees and is supported entirely by private donations and volunteers 

Research that heals so

There is HOPE

The Foundation’s mission is to discover and develop a treatment for the Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).

Progress has been made over the years in identifying the source of the disorder. Your support is crucial to continue funding high potential projects as well as a clinical trial of a repurposed drug.

Latest News

Invitation to the ARSACS International  Symposium

Invitation to the ARSACS International Symposium

Invitation to the 6th ARSACS International Symposium to be held on November 4th, 2021.   Keynote speaker Dr. Schmahmann from the Massachusetts General Hospital. Half-day virtual conferences, free registration, opened to all. See Program. Please do not hesitate to share this invitation with anyone who could be interested in the latest ARSACS research. Register now .

Radio station 92.5 ckaj is part of the efforts – Donation of $35,000. Thank you!

Radio station 92.5 ckaj is part of the efforts – Donation of $35,000. Thank you!

Mr. Robert Banford, General Manager of the 92.5 ckaj station in Saguenay, made an important donation of $35,000 to the Foundation to continue research and to support Mr. Nicolas Claveau in his fundraising initiatives ands sporting achievements in particular that of crossing Canada in a wheelchair to create awareness of the disease.

From left to right: Ms. Sonia Gobeil, co-founder of the Foundation, Mr. Robert Banford, Executive Director of 92.5, Mr. Nicolas Claveau, volunteer and sportsman and Ms. Claudine Tremblay of station 92.5.