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 ACAF. The holding of fundraisers was obligatory to assure the financing of eventual medical research as well as a potential group of persons 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 group together all the persons afflicted with a hereditary ataxia (with an identified form or not) and to extend medical research
to include them.
