Autosomal Recessive Spatic Ataxia of Charlevoix-Saguenay is a debilitating and hereditary progressive childhood neurological disorder.
Symptoms generally appear between the ages of 2 and 5 years old. Already at that age, the child’s motor skills are affected. The disorder progresses throughout the adolescence and adulthood (stiffness in the legs, increasing difficulty in walking to the use of a wheelchair). Ataxia affects the spinal cord and the peripheral nerves.
The name of the disorder refers to the Charlevoix-Saguenay regions located in the Province of Quebec (Canada) only because it was first discovered and described by doctors from the Province of Québec.
Even though initially more frequent in those regions, ARSACS cases have been identified around the world. ARSACS is the second most common recessive ataxia after Friedrich’s ataxias.
You or a member of your family has been diagnosed with ARSACS, you are not alone. ARSACS patients are all around the world.
Make your voice heard:
- register in the ARSACS International Patient Registry;
- participate in ARSACS research surveys, preclinical or clinical trials;
- stay connected with the ARSACS community via the social media.
There is hope. ARSACS research is being done to find a treatment.
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. Organize fundraising activities in your community and create awareness of ARSACS. The Foundation has no employees and is supported entirely by private donations and volunteers.
Another way to help …. Be the eyes on what is going on. You do not have to be a scientist. If you read scientific material that is worth sharing and validating (outbreaks, drugs, clinical trials, fundamental research developments), please transmit the information to the ARSACS Foundation.