The Jérôme Lejeune Foundation was established in 1996, two years after Jérôme Lejeune’s death, as a family foundation in the Lejeune family home. By 2007 the foundation had far outgrown its quarters and moved to spacious and contemporary office space on the Rue des Volontaires in close proximity to the Pasteur Institute. The foundation in Paris currently has nearly 30 employees
Supporters in France have been very generous. Current annual revenue of the foundation in Paris has exceeded $10 million with almost $5 million allocated to funding researchers working throughout the world, clinical trials, and the foundation’s own research institute. The list of donors has grown to over 90,000 with 98% of donations coming from French benefactors, 1.5% from other European sources, and a growing number from the United States and Canada. The foundation’s tremendous growth is a testimony to the commitment of the Lejeune family and Les Amis de Jérôme Lejeune, or the Friends of Jérôme Lejeune, the first circle of friends and supporters that developed around the family after Dr. Lejeune’s death to continue his work throughout the world.
All contributions received are directly applied to support the Foundation’s mission of research, care, and advocacy for individuals affected by genetic intellectual disabilities.
While the foundation’s principal area of research has been Down syndrome, it also conducts and funds research into other genetic intellectual disabilities such as Cri du Chat, Rett’s syndrome, Fragile X, and others. The Lejeune Medical Institute in Paris has a staff of physicians representing various specialties and manages approximately 3,700 consultations annually. It also serves as a clinical research site where cutting edge research is conducted and patients receive the best medical care available. The Foundation and Institute are governed by a board of directors. The President of the board of the Paris Foundation, Jean-Marie Le Méné, is the son-in-law of Dr. and Mrs. Lejeune and also serves as the Honorary Chair of the U.S. Foundation with the purpose of ensuring that the development of the U.S. Foundation is consistent with the mission and vision of the Foundation in France.
The Lejeune Foundation has supported researchers in the United States from its founding. Already engaged with the research community in the U.S., and aware of the need for more rapid advancement toward treatments, the board of the Foundation in Paris voted to support the establishment the Jérôme Lejeune Foundation USA. The mission of the U.S. foundation is the same as that of the foundation in Paris: to provide funding for research, and also care and advocacy for individuals and their families who are affected by Down syndrome and other genetic intellectual disabilities.