Dialogue between the presidents of the Jérôme Lejeune Foundation and the Institute about challenges in research.


Jean-Marie Schmitz and Jean-Marie Le Méné



Jean-Marie Schmitz, you have just accepted to chair the Board of Directors of the Jérôme Lejeune Institute. Why did you accept the mission? What does it consist of?


Jean-Marie Schmitz : I accepted, firstly, because Jean Marie Le Méné, who is an old friend, asked me too. Secondly, because I was lucky enough to meet Jérôme Lejeune in 1974, while he was still the soul of the resistance against abortion. I helped him create the « Jurists for the respect of life » which brought together the greatest names of Law, Bar and Judicial Universities.

And finally, because if we want to be the promoters of the « LOVE CIILIZATION » that John Paul II gave as an objective to all men of good will, it is necessary to bring to all people with intellectual diseases and their families the help they need, and do everything we can so that one day, these diseases may be defeated. Such as I understand it, my mission consists in carrying on my predecessor Antoine De Rochefort’s remarkable work by strengthening the Jérôme Lejeune Institute’s position within the medical and scientific world, taking advantage of its affiliation to the Saint Joseph’ Hospital and developing all possible synergies with the Jérôme Lejeune Foundation in order to make research programmes for intellectual diseases more effective.

My professional experience is that of a business man. I learned to get people from different fields to work together, help them discover the joy and the sense of team work, for the benefit of shared objectives. That is what I can do with the help of the general director of the Jérôme Lejeune Institute, Dominique Neckerbroeck, and, I think, what is expected of me.

Where does the Institute stand compared with the Foundation ?

J.-M. S. : The Jérôme Lejeune Institute has three essential missions: the first is the therapeutic, psychological and social follow-up of its patients, under the direction of Dr. Aimé Ravel, head of the consultation service. Every year, the Institute receives 2 000 patients (3600 consultations) in different fields(paediatrics, neurology, psychology, orthophony…)for a global caring of the patients, offering within each sector a very high level of competence.

The second is the training of the medical and paramedical personnel, of the families to bring them help and counselling and of the civil society actors (businesses, national education) to make it easier for patients to better integrate into society.

The third is to conduct research with therapeutic aims, which Pr. Franck Sturtz classifies in 3 different axis:

1) Direct therapeutic research, which aim is to significantly ameliorate the patients’ I.Q. and/or behavioural fields (language, communication, social insertion…)

2) “Nosological” research, to better understand the disease, the patients and their needs.

3) Fundamental research, with a therapeutic orientation to discover active molecules.

JMLMJean-Marie Le Méné : When Pr. Jérôme Lejeune died, a great number of families concerned with mental disability and cared for by him at the Necker Hospital cried out: « but who is going to look after us now? » It is to this cry of distress – becoming increasingly topical in the light of the current eugenic issues -that we answered by creating the Foundation in 1996, and then the Institute in 1998.

The Institute is the main operator wanted by the Foundation to carry on Jérôme Lejeune’s scientific and medical work for patients that he had the ambition to care for, treat and cure. The Institute is characterized by its diagnosis expertise, rich of 50 years of the Jérôme Lejeune team’s consultations and publications and of its therapeutic obstinacy, which is its reason for being. The Foundation exists, of course, to guarantee the Institute’s fidelity to its vocation but more than anything else it exists to give it every means for development. Indeed, it is its main financer and is proud of it.

How are the Foundation and the Institute complementary in research?

J.-M. S. : The Institute has 2 unique assets: that of its own experience which has been accumulating for over 15 years now and the number of patients who agree to be part of its various research programmes, which are all submitted to the Scientific Council.

It can also be the vector and the place for fructuous dialogue between clinicians and researchers, and help to identify thesis subjects in medicine and science which deserve to be supported financially.

It is thanks to this that it is able to bring its contributing to the Jérôme Lejeune Foundation in its essential animation task regarding research on genetic intellectual diseases, throughout the world.

J.-M. L.M. : Yes, the treasure of a consultation lies in the patient. And it must be underlined that their number is growing, which is a good thing but also a sign that we have more responsibility.

Indeed, we cannot disappoint all these families who have put their hopes in the service provided by the Institution.

That is why not only reception, diagnosis, counselling and follow up must be maintained at their highest standard but we also have the duty to anticipate whatever the families, who want things to change, are expecting! As mentioned by Jean-Marie Schmitz, this includes developing clinical research programmes which include patients.

What are the main projects of the Institution in regards to research ?

J.-M. S. : Priority in clinical research has been put in treating obstructive sleep apnea in adults and elderly persons and in the use of software programmes in order to ameliorate visual strategy and eye tracking and to learn graphics and to read and write. As for therapeutic research, we decided, at the end of July, to launch a study, validated by the scientific Council, concerning the effects of folic acid and a thyroid hormone on the cognitive capacities of babies with Down Syndrome. This project, ACHTYF, led by Dr. Chlotilde Mircher, will be carried out over 4 or 5 years. Many of our hopes lie in this study.

J.-M. L.M. : The Institute is the apple of the Jérôme Lejeune Foundation’ eye. We entirely trust its personnel and the counselling given by clinicians, who share relations with families on a daily basis, is very precious. We never refuse one cent to a project which aims at improving patients’ health when it has been validated by the Scientific Council, as is the case for the ACHTYF PROJECT; on the contrary, we are looking for this kind of projects. What proves more difficult is managing to have a strategic view on a short and long term basis, prioritising research objectives which remain coherent with the more fundamental ones of the Foundation, seeking for outside collaboration –because we don’t know everything-, and arbitrating. But it is the friendship shared by both presidents and also shared by many members of the Institute and the Foundation that will enable us to succeed.