In 1972, Claude St-Jean, following an evaluation of his symptoms by Dr. Barbeau (a prominent person in the neurological field), was condemned to death. He did not accept it and in response to this diagnosis decided to found a scientific committee in order to begin medical research on the disease named “Friedreich’s ataxia” (as described in books by Dr. Nicolas Friedreich in 1882). During this era, doctors knew almost nothing about the disease and their interest in research was nonexistent.
The same year, Claude founded the Canadian Association for Friedreich Ataxia. The holding of fundraisers was necessary to assure the financing of eventual medical research as well as to support a potential group of people presenting the same symptoms as himself.
In 2003, the organization changed its name following the discovery of numerous other forms of hereditary ataxia. It was then decided to bring together everyone afflicted with a hereditary ataxia (with an identified form or not) and to extend medical research to them.