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.
