|
|
The Jérôme Lejeune
Foundation, to overcome Trisomy 21 and other intelligence genetic
diseases
Our missions
Our
patients are waiting : we must find the answer.
Among other intelligence genetic diseases, Trisomy 21 (representing
about 1 case in 700 births) is responsible for the majority of mental
deficiencies world-wide. We have the firm scientific conviction that
there are therapeutic prospects.
This is the reason why we refer to intelligence diseases (which call for
a cure).
And this is why we devote all our efforts to be able, one day, to cure
the patients suffering from them.
The Jérôme Lejeune Foundation was established in order to undertake
research and to provide care in continuation of the work performed by
Professor Lejeune. The Foundation was recognised as being in the Public
Interest, by order of the French State Council on 20th March 1996.
Article 1 of the statutes
« The establishment known as the Jérôme Lejeune
Foundation, created in 1995, is intended to follow up the work to which
Professor Jérôme Lejeune devoted his life :
- Medical research into intelligence diseases and genetic diseases,
- Care and treatment of patients, in particular those suffering from
Trisomy 21 or other genetic anomalies, whose lives and dignity must be
protected from the moment of conception until they die.»
The Foundation :
the prime link between patients
and research
The number of research teams working on chromosome 21 is unfortunately
very limited : a few in France, less than 20 altogether world-wide. The
Jérôme Lejeune Foundation knows virtually all of them and funds most of
them.
The number of specialised centres for medical care of patients suffering
from intelligence diseases of chromosomic origin is even smaller : a
handful world-wide, and only one in France, the Jérôme Lejeune Medical
Centre, which is the largest.
The Foundation therefore combines the double activity of care and
research. The proximity of fundamental research is very encouraging
for the clinic doctors, who are confronted on an everyday basis with
difficult medico-social situations, and conversely, contact with the
patients is a powerful stimulus for the research workers to materialise
their efforts. This association of medical activities and research
activities is a source of beneficial synergy. The situation of the
Foundation, which links the treatment clinic and the fundamental
research centre, is therefore unique.
The Foundation has accepted the challenge :
to one day be able to cure
trisomic patients
In order to grant the wish of thousands of families stricken with
handicap, the Foundation must increase its efforts tenfold. As the
largest provider in France of funds for Trisomy 21 research, the
Foundation must now broaden its activities :
Its activities in caring for the sick.
Based on an ethical requirement which is the very foundation of the
doctor-patient-family relationship, the care activity which is already
performed at the Jérôme Lejeune Medical Centre must be extended.
Its clinical research
activities. Based on the patients treated at the centre,
offering them the opportunity of taking part in the epidemiological,
pharmacological and therapeutic research programmes.
Participation in a research
programme eis an active and risk-free way for patients to
contribute to the advancement of research in their favour.
Its fundamental research
activities. These are aimed at the molecular mechanisms of
chromosomic or genetic diseases which generate intelligence
malfunctions.
With the Foundation, Trisomy 21
ceases to be an inevitability
We are the supporters of an extraordinary idea : that it is possible to
effectively fight against intelligence diseases. In confrontation of
unexploited scientific prospects, research is a necessity for patients
and their families.
« We shall find a solution, it is
impossible not to find one. The intellectual effort needed is much less
than that required to put a man on the moon. »
Professor Lejeune
The first French language web-site on
bioethics to defend the fundamental dignity of all human life.
|
|