In 1959, Jérôme Lejeune, a brilliant geneticist, discovered Down’s syndrome. He did not win the Nobel Prize because for him, doctor, a child conceived, even with Down’s syndrome, has the right to life and not to abortion.
In 1995, a year after his death, the Jérôme Lejeune Foundation was created.
This year the Foundation is celebrating its 25th anniversary.
Jean-Marie Le Méné, president of the Foundation, magistrate, adviser-master of the Court of Auditors, member of the Pontifical Academy tells us about these 25 years.
«We will find. It is impossible that we cannot find. It’s an intellectual effort much less difficult than sending a man to the moon «said Jérôme Lejeune … after 25 years of Fondation Lejeune, what did you find?The Jérôme Lejeune Foundation has been helping and supporting research on Down’s syndrome and intellectual disabilities of genetic origin since its creation.
Progress in the follow-up of people with Down’s syndrome has been significant in recent years. The best indicator of this is the increase in the life expectancy of the population with Down’s syndrome which has more than tripled in the last thirty years. We can estimate it currently between 60 and 70 years, whereas it was only of a few tens of years 40 years ago. The improvement of the follow-up of people with Down’s syndrome could only be done thanks to a better knowledge of the pathology and associated pathologies which are now detected and corrected as soon as possible. We can cite leukemia in infants, heart disease often associated with birth, associated infections in particular ENT and respiratory and pathologies related to aging. These are now particularly followed by doctors specializing in geriatrics and familiar with Down’s syndrome21.
In the pediatric population, one of the great discoveries is the high incidence of sleep apnea in infants and children with Down’s syndrome. This requires screening for sleep apnea which induces corrective measures in the event of screening (ENT intervention and / or night mask in particular). Sleep apnea screening allows better learning of basic acquisitions. We are continuing these explorations in the population with Down’s syndrome.
In terms of more basic research, chromosome 21 is now well known, more than 350 genes, some of which are involved in cognition. We can cite the number of important publications on certain specific genes DYRK1a, CBS, RCAN1 and USP 16. The functioning of these genes in connection with the other genes of chromosome 21 and the genes of other chromosomes are better known. Knowledge of these genes makes it possible to understand their implication on certain metabolic pathways. Only better knowledge will make it possible to define potential therapeutic targets. Several teams that we support around the world are being selected to develop enzyme inhibitors linked to one of these genes. This gives hope for the development of effective and well-tolerated molecules in future years.
The presence in the population with Down’s syndrome with a high incidence of pathologies such as Alzheimer’s increases the interest of researchers on these so-called “cross” pathologies between the Down’s syndrome population and the general population and thus the population with Down’s syndrome can benefit from advances in the general population.
The Lejeune Foundation is a galaxy which has in its heart the goal of «researching, treating, defending»….
Like Jérôme Lejeune, the foundation has harmoniously balanced its activities. She first recreated and funded a multidisciplinary medical consultation – the Jérôme Lejeune Institute – dedicated to people suffering from a mental handicap of genetic origin. This consultation is the largest in Europe (10,000 patients / 500 new per year) and probably in the world as the patients concerned are neglected by medicine. It seems so necessary that even the public hospital transfers its patients to the Institute as the clinics that welcome people with intellectual disabilities close.
Then the foundation takes up the scientific challenge by funding research projects in France and abroad (around 700 for 20 years). Fundamental therapeutic research in which it is a question of finding molecules that inhibit certain genes present in triplicate and suspected of being active in Down’s syndrome. Clinical research directly beneficial to the Jérôme Lejeune Institute, whose very large number of patients allows for multiple inclusions. A so-called crossover research, that is to say associating Down’s syndrome with another pathology such as cancer, Alzheimer’s or autism for example and which allows to widen the panel of interested researchers. We can say that the foundation has relaunched research in this area.Finally, obviously, the foundation defends life from conception to natural death as prescribed by its statutes and as medicine has done since the ages. This explains why the foundation challenges before the judge illegal decisions of the Biomedicine Agency destroying human embryos. This explains why she criticizes euthanasia, which suggests that after that of Vincent Lambert the next victims will be the aging mentally handicapped, of whom the Institute takes great care. Jérôme Lejeune crossed the line on television with those who accused him of not having an abortion «his monstrous children». He fought euthanasia with his cancer friend, Professor Lucien Israël. He has testified as an expert in many countries to the perfect humanity of in vitro embryos. Without these developments, his scientific research and clinical medicine for the benefit of the most underprivileged would have been meaningless. This shows the coherence of Jérôme Lejeune’s commitment and that of the foundation which is part of its wake today.
Funding of more than a hundred research programs each year, more than 500 scientific publications, 11 research programs, 10,000 patients followed by the Jérôme Lejeune Institute … these are some numbers from the Foundation …The Jérôme Lejeune Foundation has sponsored more than 700 research projects worldwide since 1997. Over 380 of these projects are linked to Down’s syndrome.
In recent years, the number of research programs at the Jérôme Lejeune Institute has increased thanks to clinical research programs aimed at better monitoring of the patient. The aim of the Jérôme Lejeune Institute’s research is to characterize new markers for evaluation and monitoring (imaging, neuropsychological scales) and a better understanding of the population with Down’s syndrome. The Jérôme Lejeune Institute’s research also benefits from the presence of a biomedical database which allows numerous contacts with clinicians and researchers around the world.
The Jérôme Lejeune Institute also aims to train caregivers and families to support and monitor people with intellectual disabilities.
What is the most important and significant event in these 25 years?
The foundation is not an association of parents of children with disabilities, a lobby of activists, or a religious movement. It is a recognized scientific and medical institution of public utility intended to continue the work of Professor Jérôme Lejeune. He was the researcher who discovered the origin of Down’s syndrome and other genetic mental retardations. He was also the doctor who cared for those affected by these pathologies, in particular by being the head of the genetics department at the Necker Children’s Hospital in Paris. Finally, he was the one who explained that it was no longer necessary to seek or cure if one killed by abortion or euthanasia the people who were desperate to cure. The future gave him doubly reason since on the one hand, except failure of the screening or insistence of the parents, there are no more children with disabilities, these being all aborted, and on the other hand we still cannot to heal because there are no more public research programs concerning them. The most important event in 25 years has been to extend the echo of Professor Lejeune’s prophetic voice by creating the foundation and to concretely defeat eugenics by creating the medical consultation. We don’t do better than the others but we do what the others don’t do anymore! This legacy of a Hippocratic tradition that we received from Professor Lejeune is not reserved for us. It is for our world which forgets it today
What are the next “adventures” of the Foundation?Jérôme Lejeune has shown that there are things that remain and things that age. Scientific theories and techniques are aging: today there are diseases that science cannot cure or treat, but there is no reason it cannot do it tomorrow. It is to look back to the past to despair of medical progress to the point of killing the sick. If we devote resources to research, we will find. In the meantime, the doctor’s duty remains to respect the life of the patient entrusted to him and there can be no question, under any pretext, of dispensing it, in particular if it is a question of yielding to the false promises of the procreative industry which disregards the human embryo. Prof. Lejeune summed up his thought in an unsurpassable formula: «when nature condemns, the role of medicine is not to execute the sentence but to seek to commute the sentence».
The Foundation’s next «adventures» consist of help our world today not to despair of the future! We are receiving more and more requests in France and foreign countries to provide help, support, training to resist the global technicalization of medicine and the general hunt for imperfections. Jérôme Lejeune said: «there is no technical solution to the madness of men» and again «technique is cumulative, wisdom is not». Our contemporaries need these words of universal hope. They are worn by a man, scientist, layman, married and father, whose beatification process is underway, that is to say which we believe he has heroically lived the Christian virtues. The outcome of this trial is also one of the Foundation’s next adventures .
ONEOFUS
European Federation for Life and Human Dignity
