Genethon’s Board of Directors

Mother to a child suffering from Duchenne muscular dystrophy, Laurence Tiennot-Herment has been Chairwoman of AFM-Telethon since 2003. A parent and patient association, AFM-Telethon is a major player in research and development of innovative therapies for rare diseases (250 programs and young researchers funded each year, 33 clinical trials supported for diseases of the vision, blood, brain, immune system and muscle). She is also president of Genethon, of the Institute of Myology (two laboratories created by AFM-Telethon and both leaders in their fields, namely gene therapy and science and medicine of the muscle), and a qualified member of Inserm’s Board of Directors. AFM-Telethon is also a founding member of Genopole, the French foundation for Rare Diseases and the Institut Imagine.

Marc Bouillet, consultant, former Director of Governmental Affairs and Health Economics at Johnson & Johnson Medical Devices & Diagnostics, former CEO of AFM. He is also treasurer of the Institute of Myology association.

Marie-Christine Ouillade, member of the Board of Directors of AFM, engineer and member of the advisory board of the French biomedicine agency.

Jean-Pierre Lamorte, a telecommunications engineer, joined the fight within the association against the disease of his son in 1993, when the diagnosis was announced. He was involved in the creation of the delegation of AFM-Telethon for the Hauts-de-Seine region, the creation of the Becker Duchenne Interest Grouping, and joined the AFM-Telethon Board of Directors in 2005 as Secretary, then Treasurer, then Vice-Chairman in 2008.

He also sat on the Board of Directors of the Institute of Myology in 2007/2008 and has been on Genethon’s board since 2007. He was Family Outreach Director at AFM-Telethon from 2009 to 2014.

Expert consultant in pharmaceutical regulatory affairs. A member of the French national academy of pharmacy (section of pharmaceutical and legal sciences applied to the industrial environment of medications and other health products). Author of several academic reports, including the June 2018 report on unavailability of medications. Marie-Christine Belleville has been involved closely in the production of several European technical guideline texts.

Founder in the United States of an administrative and financial consulting firm, Marie Landel has an international profile, with a career spent between Africa, France and the United States, where she now resides. She is a qualified Chartered accountant; she managed and grew her business over 25 years. She specializes in supporting leaders throughout the life cycle of a company, making them benefit from her expertise in the American and European environments.
She sits or has sat on several boards, notably currently on Transgène, and in the past TxCell and CellNovo.

Former public works engineer, Jacques Salama is the dad of a young man with Duchenne muscular dystrophy. He has been volunteering for many years in the AFM-Telethon. He was general delegate for research, Secretary-General of the Institute of Myology, then a member of the AFM-Telethon Board of Directors, and he is now the Treasurer of the AIM association.

A medical doctor, with a specialisation in neuromuscular diseases, Dr. Urtizberea has served as Medical Director and Director of the Myology department at AFM-Telethon and General Delegate of the Institute of Myology, where he is still a teaching officer.