June 13th would mark Dr. Jerome Lejeune’s 89th birthday, so in honor of his life and legacy as the Father of Modern Genetics, we are dedicating this newsletter to a topic he was passionate about- research, and the hope it provides to people living with genetic intellectual disabilities.
When Jerome Lejeune counted the 47th chromosome in 1958 and identified the genetic cause of Down syndrome, he knew he had discovered an opportunity for researchers to investigate what he hoped would someday be a “cure.” As time progressed into the late 1960s, a very real threat emerged. Amniocentesis was used in 1968 for the first time to diagnose Down syndrome in the womb. Just a few years later there was a push to legalize abortion in France, and babies prenatally diagnosed with Down syndrome became the first targets. Jerome Lejeune was heartbroken that his discovery could be used to selectively terminate a pregnancy prenatally diagnosed with Down syndrome, but he was confident that research would one day remove any reason a parent would feel compelled to make that drastic decision.
Dr. Lejeune’s future as a physician and researcher was decided when a young patient ran into his examination room one day. Throwing his arms around him, he said, “You have to save us because they want to kill us.” The young patient had seen a debate on television the evening before, debating what we now call disability selective abortion. Dr. Lejeune knew what he must do.
After Jerome Lejeune died in 1994, this same determination set the course for the Jerome Lejeune Foundation. The Jerome Lejeune Foundation is first and foremost a research foundation because for us, research can be a powerful tool for advocacy. It holds potential to improve lives, and to be an antidote to the problem of prenatal diagnosis and abortion.
Like Jerome Lejeune, the Foundation is narrowly focused on improving the lives of children and adults living with genetic intellectual disabilities through medical research into targeted treatments to improve cognition. We are also focused on advancing prenatal therapies that may one day soon offer families the real hope that after an early prenatal diagnosis, their child may develop typically in the womb and be born healthy and strong.
Without our philanthropic partners, this research would not be possible. By working together, we can secure a better future for children born with a genetic intellectual disability. Together, we can remove a parent’s fear and uncertainty after a prenatal diagnosis. And, together, we can make Dr. Jerome Lejeune’s dream for the future a reality!
Why not give Dr. Lejeune a birthday present today with your tax-deductible contribution to continue his work through the Jerome Lejeune Foundation.
The Jerome Lejeune Foundation (France and the U.S.) was founded in 1996 to carry on the work of the legendary geneticist, Jerome Lejeune. Through its mission of research, care, and advocacy, the Jerome Lejeune Foundation serves those with Down syndrome and other genetic intellectual disabilities in a spirit of profound respect for their inherent human dignity, and that of all human persons.