Created in 1958 by a group of patients and their families, and recognized as being of public utility in 1976, AFM (French Muscular Dystrophy Association) has a single objective : to defeat neuromuscular diseases which are devastating muscle-wasting diseases. It has set itself two missions : curing neuromuscular diseases and reducing the disabilities they cause.
To achieve these goals, AFM organises a Telethon on the first weekend in December, every year since 1987. This fund-raising operation, combining a 30-hour TV show and tens of thousands of local events across France, also aims to raise public awareness of neuromuscular diseases. The Telethon provides most of our donations and operates as a important vehicle for information, communication and education.
Thanks to Téléthon donations the AFM is able to finance a number of different therapeutic avenues. While some are based upon classical pharmacology, others are very innovative: using a healthy gene as a medicine, intervening directly on the gene in order to repair it, reconstructing damaged organs using stem cells etc. Over the last few years these therapeutic strategies have demonstrated their effectiveness in animals affected with rare diseases and – for the first selected diseases– in humans. 34 trials are under way or in preparation for different disease research programmes financed by the AFM through Téléthon donations. Now researchers are beginning to find therapeutic solutions for dozens of genetic diseases (muscle, vision, immune deficiency or even ageing). But beyond rare diseases, the results obtained by the researchers and physicians working with the AFM will also benefit the larger number of people affected with more frequent diseases.
At the same time the AFM continues to provide help to families in their daily life and is working for patients to be recognised as citizens in their own right. Most of these claims were satisfied by the law concerning equality of opportunity in 2005. This provided for a right to compensation for expenses for the personal and technical assistance necessary to the autonomy of the disabled, a right to normal schooling, a right to work etc. And in the field, the AFM has been spearheading the cultural turning point necessary for the materialisation of these rights.