Autosomal Recessive Spastic Ataxia of Charlevoix–Saguenay (ARSACS) is a rare, inherited neurological disorder that typically begins in early childhood. Symptoms usually appear between ages 2 and 5, affecting motor skills and progressively worsening through adolescence and adulthood—often leading to increased stiffness, difficulty walking, and eventual wheelchair use. The condition impacts the spinal cord and peripheral nerves.
Named after the Charlevoix–Saguenay regions of Québec, where it was first identified, ARSACS is now found worldwide and is the second most common recessive ataxia after Friedreich’s ataxia.
Dr. Bernard Brais' video presentation on ARSACS. Available in French only.
Research that heals
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.
People with ARSACS
If you or a family member has been diagnosed with ARSACS, make your voice heard:
Register in the ARSACS International Patient Registry, participate in research and clinical trials, and stay connected with the community on social media.
There is hope—research is underway to find a treatment.
Researchers
The Foundation is financing several ARSACS research projects in several countries.
Research grants are available to researchers. The research grant could be as high as $100,000 for a 12 month period.
Research tools are available to researchers.
Become a volunteer
Become a volunteer and help raise awareness of ARSACS by organizing community fundraisers. The Foundation relies entirely on volunteers and private donations.
You can also help by sharing relevant research or updates—no scientific background needed.