The mission of the Jérôme Lejeune Foundation USA is to provide research, care, and advocacy to benefit those with genetic intellectual disabilities. This is carried out by conducting, promoting, and funding in the United States therapeutically oriented research; by assisting in the development of healthcare services for these individuals; and by serving as their advocate in a spirit of respect for the dignity of all human persons.
Created in 1996 in Paris and in 2011 in the United States, the Jérôme Lejeune Foundation is registered with the Internal Revenue Service as a 501(c)(3) nonprofit corporation serving those with genetic intellectual disabilities and their families:
- Research in order to identify targeted treatments for patients affected by genetic intellectual disabilities. The Jérôme Lejeune Foundation it is the world’s largest private funder of research on trisomy 21 (Down Syndrome) and other disabilities such as fragile X syndrome, Rhett syndrome, Prader-Willi syndrome, and others. Projects funded by the Foundation are now beginning to move into early clinical trials with the great hope that commercially available products will be available to improve the lives of those affected by genetic intellectual disabilities within 10 years.
- Care to provide specialized medical treatment and follow-up throughout the patient’s life. The U.S. Foundation intends to develop and promote a model of care for patients in the United States based upon the work of the Lejeune Institute in Paris, a medical clinic which provides care to over 5,000 patients.
- Advocacy for the fundamental human rights of persons with genetic intellectual disability. The Jerome Lejeune Foundation is committed to the inherent human dignity of all persons and the protection of life from conception to natural death. Through educational programs, publications, and engagement in bioethical debates the Foundation works to ensure that persons with genetic intellectual disabilities are understood and respected for the unique gifts they bring to the human community.