Placing respect for human dignity at the heart of every single action undertaken by the Foundation, while prohibiting any participation in projects that do not abide by this principle.
Undertaking and attempting everything possible, with determination, to provide a treatment for patients affected by a genetic intelligence disorder.
Demonstrating that we are worthy and respectful of the trust placed in the Foundation by patients, their family, donors and volunteers; this trust serves to encourage and spur on each of the directors and staff members of the Foundation.
The Jérôme Lejeune Foundation commitment
By Thierry de la Villejégu,
Executive director of the Jérôme Lejeune foundation
The idea of creating a Foundation was proposed by friends and colleagues of professor Lejeune and by families of his patients at Necker on the day of his burial – 3 April 1994. Two years later, on 20 March 1996, a declaration was signed by Alain Juppé, then French prime minister, who gave the Jérôme Lejeune Foundation public interest status and his seal of approval to the Foundation’s statutes.
The name of the Foundation was not a random choice. The choice of the name “Jérôme Lejeune” was a clear expression of the fact that the young Foundation sought to follow in the professor’s footsteps. He had devoted himself against all odds, to defending the life and dignity of thousands of people suffering from an intellectual disability of genetic origin, such as Down syndrome (trisomy 21). He had cared for these individuals using his medical knowhow and his humanity, showing incredible tenderness for all human life. In his wake, the Foundation anchored its commitment in providing service for the vulnerable.
The three commitments made by the Foundation – research, care, and advocacy – are all inextricably linked. All three commitments contribute to the restoration and wellbeing of individuals affected in their intelligence. Omitting any one of these commitments would cast doubt on the credibility of his life’s work. In fact, what credit could be afforded to an institution that provides treatments for patients with Down syndrome (trisomy 21), finances research projects, but which closes its eyes to screening policies that consciously do away with babies who screen positive? Similarly, what credit could be afforded to an institution that fights for the defence of the disabled individuals if it did not strive to relieve their suffering with appropriate care? Professor Lejeune’s coherent thinking, action and courage, which made him a defender of life, medicine and research, is an inspiration for the Foundation every day, and compels it to think globally and act with determination at the service of fragile individuals.
Subsequent to his discovery of Down syndrome (trisomy 21), Professor Jérôme Lejeune understood that this discovery would be deviated from its medical purpose, namely to treat and possibly heal patients, to be placed at the service of a screening and elimination policy of babies carrying Down syndrome (trisomy 21). At this point he began a race against time to save Down syndrome children.
The only possible solution was to find a cure: Jérôme Lejeune said “We will find it; it is inconceivable that we will not find a solution”. It takes much less intellectual effort than to send a man to the moon”.
“It’s not medicine we need to be wary of, but man’s madness. Our power to alter nature by exploiting its laws increases each day with each new day of experience of those who have preceded us. Using this power wisely is what each generation in its turn must learn. Of course, today we are more powerful than before, but not wiser: technology is cumulative, wisdom isn’t”.
Resear, Care, Advocacy. These three verbs are the daily prompt for the Foundation to progress in the fields of research, science and bioethics.
The Jérôme Lejeune Foundation would not be able to honour its commitments without the generous and loyal aid of its donors. The general interest missions it finances receive no state funding. This endured state of affairs is not without its brighter sides. It has given rise to very close relationships woven between the Foundation and its friend donors and volunteers. To those people who provide their financial and intimate support, the Foundation has made another commitment, namely, never to disappoint. Between the donors and the Foundation, between the volunteers and the Foundation, we can legitimately talk about an ideological family, bonded by the same vision of mankind.
To replenish this trust, it must spend in the most professional way possible each euro offered, and it must draw up an annual report that is as precise as possible. It must respond to the numerous letters that donors send. It must welcome them and encourage meetings. It must faultlessly lead the fight against the condition, and death. Without its donors, there would be no possible future for restoring the life of vulnerable individuals.