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Pioneering innovative therapies to improve the lives of those with genetic intellectual disabilities

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Our Work

In 1958, Professor Jerome Lejeune, a doctor and researcher at the Necker Hospital in Paris, discovered an extra chromosome on the 21st pair and in so doing discovered the genetic cause of Down syndrome. His discovery has been compared in significance to the discovery of bacteria by Antony Van Leeuwenhoek, the "father of microbiology," in the 17th century. As the "father of modern genetics," Lejeune received many international awards for his work, including in the U.S., the Kennedy Prize from President John F. Kennedy in 1962, and in 1969 the William Allen Memorial Award from the American Society of Human Genetics, the highest award possible for geneticist. 

Trisomy 21 (Down syndrome) is not a fatal condition, but a disability caused by a genetic error at conception and the most common single cause of birth defects in humans. Professor Lejeune was convinced that one day researchers would discover treatments that would largely restore the intellectual capabilities of individuals born with Down syndrome. The Jerome Lejeune Foundation is committed to fulfilling Professor Lejeune’s dream, and in collaboration with researchers around the world conducts and funds research leading to targeted treatments to address issues related to cognition, memory, and speech, as well as the other comorbidities caused by the extra 21st chromosome.

Every year the Jerome Lejeune Foundation provides funding to over 60 research teams who are pursuing treatments for genetic intellectual disabilities in the US, Canada, France, Israel, Italy, Lebanon, Spain, Switzerland, the UK, and other countries. The Foundation is the world’s oldest and largest funder of research to find treatments for Trisomy 21 and other genetic intellectual disabilities. Our grants are 100% funded by private donations.

The Foundation also supports clinical research through the Institut Jerome Lejeune in Paris, such as the ACTHYF program which aims to establish a link between the use of folinic acid and thyroid hormone to improve the psychomotor development of toddlers with Down syndrome. The Institute offers lifelong, specialized medical care through a medical and paramedical team. The Institut Jerome Lejeune treats over 3,600 patients annually from France and abroad. The Foundation’s mission of Care in the United States will focus on improving primary care for individuals with genetic intellectual disabilities through developing improved standards of care and education of health care workers in the area of genetic intellectual disability.

All of the Jerome Lejeune Foundation and its subsidiaries’ work has an ethical label which ensures the utmost respect for the value of each and every human life. The Foundation will only finance research that respects human life from conception to natural death. We do not support any projects that use products derived from human embryos or fetuses as research material.

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Jerome Lejeune Foundation