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2014 a year at the service of Down Syndrome

Published on 01/06/2015 in Event

2014

2014. The Jérôme Lejeune Foundation has once again spent a year serving research on genetic intellectual diseases, patients, and their families.


tu compte les chromoBecause medical research is a long-distance race in which the Foundation, following Professor Lejeune’s lead, is engaged, athletes have taken up the challenge of the “Semi-Marathon”, “the “Schneider Electric Marathon” of Paris and “the Course des Héros”. It was together, as a group, that the team of KilometreT21 collected 20 000€! Research is making progress in a literal sense but also in a figurative one: as a proof, the inclusion of the 100th patient in the clinical trial ACTHYF led by the Jérôme Lejeune Institute. But, as reminded by the viral campaign, launched for the national Down Syndrome Day on November 17th last year, efforts must remain constant so that the scientists may progress. And it was by getting together that the scientists were able to share about the advances of research during the International Clinical Jérôme Lejeune Days from September 17th to 18th last year.


Researchers have kept in mind that they must stay anchored in the daily life of families in which there are members living with genetic intellectual diseases. Such was the aim of the day for parents organised as a continuation of the ICJLD. That event enabled the participants to go over the issue faced by parents on a daily basis, such as the passage towards adulthood or the role of parents in education. The central role of parents and siblings: this theme was covered by several books in 2014 thus providing strong testimonies. The Foundation is truly committed alongside parents, as proven by the “Dear Future Mom” campaign set up for the International Down Syndrome Day with a group of European associations.

Three teenagers, well known by the Foundation, participated in this video which met with phenomenal success on an international level by addressing a message, reassuring and full of hope, to mothers who have a child with Down Syndrome. This is the message that the Foundation wished to develop by, this time, addressing fathers through the very successful video “My Daddy”

censureUnfortunately, this support message directed to mothers and, more largely, to families including members who have Down Syndrome doesn’t seem to be to the CSA’s liking. Deeply affected by this reaction, parents were once again able to count on the support of the Foundation. Indeed, as an answer to the CSA’s reaction, the Foundation is supporting a first-time-in-history-event: to contest the CSA’s decision concerning Dear Future Mom, seven young adults living with Down Syndrome brought a case in front of the State Council for the first time.

The Foundation puts people with Down Syndrome at the very centre of its activities, and this commitment bears a lot of fruit, as shown by the ECHR’s notice specifying that aborting a child with Down Syndrome is not a human right. This decision came as a crowning of the European mobilisation “Stop Eugenics now” started in 2012 by the Foundation along with several European associations. Changing the way people look at Down Syndrome, reaffirming their qualities and aptitudes, this is what Julien Perfumo does in his book and what Eléonore Laloux reminds us of in her beautiful testimony.

Giving people with Down Syndrome a central place in society and putting their qualities forward is what Professor Jérôme Lejeune did his whole life. 2014 gave us the opportunity to go over his discourse, which is still highly topical, by publishing his unpublished texts for the 20th anniversary of his death and the creation of the Foundation that carries his name.

This anniversary that we started celebrated last April is being sponsored by Keenan Kampa, an American dancer, who came out with a wonderful phrase which explains the relationship there is between the current battles and the work of the professor: “We are all a Jérôme Lejeune!”.

 

2014 et ces célébrations permettent de répondre exhaustivement aux attaques dont est victime l’œuvre scientifique de Jérôme Lejeune. Héritage scientifique mis en valeur par ailleurs par l’exposition « Jérôme Lejeune, une découverte pour la vie » qui a été inaugurée à Arras puis s’est déplacée à Lyon accompagnée d’une pièce de Fabrice Hadjadj et d’une soirée débat.

All these celebrations of 2014 enabled us to answer to all the attacks of which Jérôme Lejeune’s scientific works was a victim. Furthermore, this scientific heritage was put in the spotlight by the exhibition “Jérôme Lejeune, a discovery for life” that was inaugurated in Arras, and was then taken to Lyon along with a play from Fabrice Haddjadj and a discussion evening.

2014 has been a very full year for the Jérôme lejeune Foundation which kept its focus on the directions given by Jérôme Lejeune 20 years ago: “You must hate diseases and fight them but you must love the sick and treat them.”

 

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