Laurence TIENNOT-HERMENT

Bio

A chartered accountant by training, Laurence Tiennot-Herment was managing a food-processing company in Normandy when, in 1987—the year of the first Telethon—she learned that her only son, aged three, had Duchenne muscular dystrophy. Outraged by the lack of research and unwilling to accept the inevitability of an incurable disease, she fully committed herself to the patient advocacy movement. Her first priority was the Telethon, convinced that funding was “the lifeblood of the fight” against disease, and later she became deeply involved in shaping the scientific strategy aimed at turning research into treatments.

She initially organized local fundraising events for the Telethon, 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 July 4, 2003. Just a few weeks later, her son, Charles-Henri, passed away at the age of 20.

She also serves as President of two laboratories established by AFM-Téléthon: Généthon, one of the world’s leading gene therapy centers for rare diseases, employing around 250 experts, and the Institute of Myology, a leading center for muscle science and medicine with approximately 300 experts.

AFM-Téléthon is a unique and unconventional organization: a patient-led association that creates its own research laboratories and funds the entire research pathway through to the development of treatments. Today, the organization employs nearly 600 dedicated staff members, 75% of whom work directly on its social missions, and relies on nearly 3,000 year-round volunteers, as well as 260,000 volunteers during the 30-hour Telethon event. Together, they are united by a single goal: to cure.