Our Mission
Action for ARSACS Foundation USA (AFA) is a newly established 501(c)(3) nonprofit organization committed to advancing research, raising awareness, and accelerating the search for effective treatments and a cure for Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS)—a rare, inherited neurodegenerative disease that affects coordination, mobility, and quality of life.
Driven by urgency and compassion, Action for ARSACS brings together patients, families, scientists, and clinicians to foster collaboration, support groundbreaking research, and provide hope for those living with this devastating condition. Our mission is clear: to turn the tide against ARSACS through strategic funding, global partnerships, and unwavering advocacy for those impacted by this disease.
Together, we believe action can lead to answers—and ultimately, a cure.
We fund research to discover and develop treatments for ARSACS
The ARSACS Foundation, our partner based in Canada, serves as the hub for information about ARSACS. It includes a library of medical publications, news updates about the latest ARSACS research projects, and many other valuable resources for ARSACS patients around the world. It also has a Patient Registry, and we strongly encourage all ARSACS patients to register there. The information gathered in this registry will assist in clinical trials as we strive to find treatment options for ARSACS.
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A new ARSACS diagnosis is difficult. We are here to support you and your loved ones.
AFA is building strong connections across the world to advance our mission. Our community of patients, families, researchers, and many more are coming together to enhance the search for new treatment modalities. Visit our Patient Resources section to learn more about the various organizations that directly support our mission.
Join us now!
With your help, we will move ARSACS research forward more quickly
Our partnerships with leading research researchers in the United States and across the world will help identify key drug targets for testing and explore the potential of a gene therapy cure for ARSACS. All donations are tax deductible.