Jérôme Lejeune and President John F. Kennedy, Pioneers of Advocacy for those with Down Syndrome
October is Down Syndrome Awareness Month and various advocacy organizations across the country are conducting “Buddy Walks” to raise funds for research and to increase awareness among Americans of Down syndrome, or Trisomy 21, and other genetic intellectual disabilities. As we head to the streets in support of our family members and friends, we should do so with thanks and remembrance of two key individuals who were among the first advocates.
First Jérôme Lejeune, the French geneticist who discovered the cause of Down syndrome and appropriately named the disability Trisomy 21, to describe the disability as being in the genetic structure of the individual. Prior to Lejeune’s discovery in 1959 children born with an extra 21st chromosome were scorned as “Mongoloids” and considered to be the product of syphilis, or some immoral conduct of their parents. Dr. Lejeune proved, by his discovery, that Down syndrome is caused by an error in cell division immediately following fertilization. With his discovery, Lejeune became a champion of the dignity of these individuals. He committed his life to finding a cure, to caring for their physical and emotional needs, and to being their advocate, giving the full measure of his life to ensure their place of respect in society as well as their very survival. He knew that once diagnosed in their mother’s womb their lives would be threatened by those seeking to rid humanity of “imperfection”. In fact, over 90% of babies diagnosed with Down syndrome in the United States are aborted and about 96% in France. Dr. Lejeune’s work continues today through the Jérôme Lejeune Foundation in Paris, and the newly formed daughter foundation in the United States, The Jérôme Lejeune USA Foundation. The Lejeune Foundation has contributed over $21 million dollars to research initiatives around the world in addition to maintaining the Lejeune Institute, a medical clinic in Paris which provides care to patients through the provision of a variety of medical specialists.
Second, we owe deep gratitude to President John F. Kennedy for bringing intellectual disability out of the shadows and into the light. Prior to 1963 few were engaged in research into the causes and treatments of intellectual disabilities. The president’s younger sister, Rosemary, had been born with an intellectual disability so he was very aware of the neglect these individuals and their families experienced. 9 months after his inauguration, on October 11, 1961, he appointed a panel to address this missing aspect of healthcare and social services in the United States stating: “The central problems of cause and prevention remain unsolved, and I believe that we as a country, in association with scientists all over the world, should make a comprehensive attack.” Attack he did. The panel spent a year considering his request and then presented him with 100 recommendations for a federal approach to “mental retardation”. At the press conference announcing the new legislation he said in his most eloquent way: “It was said, in an earlier age, that the mind of a man is a far country which can neither be approached nor explored. But, today, under present conditions of scientific achievement, it will be possible for a nation as rich in human and material resources as ours to make the remote reaches of the mind accessible. The mentally ill and the mentally retarded need no longer be alien to our affections or beyond the help of our communities.”
It is clear why President Kennedy acknowledged Jérôme Lejeune’s achievement in Down syndrome research by awarding him the Kennedy Prize in Genetics in 1962. It is also no wonder that members of the Kennedy-Shriver family befriended Dr. and Mrs. Lejeune and together became strong advocates for the intellectually disabled, paving the way for the ongoing pursuit of research leading to treatments – some of which are now in clinical trial.
Even the most skeptical of researchers expect the work of these pioneer advocates will soon bear fruit with treatments which improve cognitive function, and address the particular health concerns of these remarkable members of our human community.
The Jérôme Lejeune Foundation in Paris and the United States is proud to continue the legacy of Dr. Lejeune. The Foundation is the largest funder of research in the world and is unique among similar organizations in that it continues to embody the life of Jérôme Lejeune in his research, care, and advocacy of individuals with intellectual disabilities of a genetic origin.