Laurence TIENNOT-HERMENT

Bio

Chartered accountant by training, Laurence Tiennot-Herment was running a food-processing company in Normandy when, in 1987 — the year of the first Téléthon — she learned that her only son, aged three, had Duchenne muscular dystrophy. Outraged by the absence of research and refusing to accept the inevitability of an incurable disease, Laurence Tiennot-Herment became fully committed to the associative fight: first and foremost through the Téléthon (convinced that funding was “the lifeblood” of the fight against disease), and later through scientific strategy (to turn research into treatment). She initially became involved by organizing fundraising events for the Téléthon, then joined the departmental branch of AFM-Téléthon before becoming a member of its Board of Directors.

She was elected President of the Association on 4 July 2003. Her son, Charles-Henri, passed away a few weeks later, at the age of 20.

She is also President of two laboratories created by AFM-Téléthon: Généthon, one of the world leaders in gene therapy for rare diseases (250 experts), and the Institut de Myologie, a center of excellence in muscle science and medicine (300 experts).

Our association, with its unique and unconventional model — a patient-led organization that creates its own laboratories and funds research all the way to treatment — now employs nearly 600 committed staff members, 75% of whom serve our social missions, alongside nearly 3,000 permanent volunteers and 260,000 volunteers during the 30 hours of the Téléthon, all united in pursuit of a single objective: to cure.