French Muscular Dystrophy Association (AFM-Téléthon)

AFM-Téléthon is a French association of activists, patients and parents of patients concerned with genetic, rare, progressive and severely disabling diseases — neuromuscular diseases. It was born of a conviction and a will to cure diseases long considered incurable. It is also the Téléthon, a popular mobilization unique in the world that brought rare diseases out of the scientific and medical desert and enabled a triple genetic, social and medical revolution. The association was created in February 1958 as the Association Française pour la Myopathie (AFM) by a handful of parents, with Yolaine de Kepper — mother of seven children, four of whom were affected by Duchenne myopathy — as founder and first president. In 1976 the association was recognized as being of public utility. The French Téléthon was created in 1987 based on an American concept, associating since its first edition a television broadcast and tens of thousands of events throughout France.

In February 1958, a handful of parents revolted against the ignorance and powerlessness of medicine and science in the face of neuromuscular diseases affecting their children, and decided to create the Association Française pour la Myopathie (AFM). Yolaine de Kepper, mother of seven children, four of whom were affected by Duchenne myopathy, was the founder and first president of the association. The AFM fought to have diseases neglected by public authorities and poorly known to doctors and researchers recognized. In 1976, the association was recognized as being of public utility. The French Téléthon was created in 1987 based on an American concept, associating since its first edition a television broadcast and tens of thousands of events throughout France. In 1986, Bernard Barataud, then president of the AFM, and Pierre Birambeau, development director, both fathers of boys affected by Duchenne myopathy, were at the origin of the creation of the Téléthon in France; at Bernard Barataud's request and with the approval of the AFM board, Pierre Birambeau went to the United States in 1986 to study the American Téléthon, a charitable televised marathon carried since 1966 by the actor Jerry Lewis. Convinced that the Téléthon was the solution to bring rare diseases out of oblivion and to have the means to fight them, the two fathers proposed to the AFM to transpose the American concept to France and organize a French Téléthon.

A patient-led association fighting rare neuromuscular diseases, mobilizing the public through the Téléthon.

1. 1AFM-Téléthon : innover pour guérirafm-telethon.fr
2. 2Notre histoire | AFM Téléthonafm-telethon.fr
3. 3L’histoire du Téléthon | AFM Téléthonafm-telethon.fr