The telethon : showing the best of ourselves

Pierre Birambeau was an entrepreneur in charge of an industrial foundry when he discovered in 1977 that one of his two sons had a myopathy. He found a small association, the Association française contre la myopathie (AFM) which, at his and Bernard Barataud's instigation, took off. Confronted by the inertia of medical authorities who offered no hope of curing the disease, and motivated by a belief that there might be genetic progress, he and his family left for New York in August 1986 to study the idea of the Telethon, in the country where Jerry Lewis' funny faces for charity could be transformed into millions of dollars. In 1987, he adapted the US Telethon and brought it to France with instant, wide-ranging and growing success. Helped by donations resulting from the Telethon, the AFM was able to stimulate medical advances in deciphering the human genome. What was the original motivation for this extraordinary story ? What lessons can be drawn from it in the management of associations in general ?