It was Down Syndrome that was being honoured on March 10th at the European Parliament: a day devoted to research on genetic intelligence diseases. Moving, full of hope, the day was a strong sign sent to European parliamentarians with, amongst other things, the exceptional presence of the European commissioner Carlos Moedas, Patricia Toia, vice-president of the European Industry, Research, and Energy Commission, as well as the European Slovak deputy Miroslav Mikolasik, co-organiser of the day. Review of an innovative day.
Over a hundred people were present yesterday at the European parliament to attend the roundtable: “Treating Down Syndrome: myth or reality?”
Eléonore and Robin, two young people living with Down Syndrome, opened the roundtable by speaking, very simply, of their needs and of the hope their have placed in research. Their moving testimonies were backed by Carlos Moedas, European commissioner for research, who ensured Eleonore and Robin of his personal commitment to scientific research on mental disabilities. Personally, it was meeting his brother-in-law, Rodrigue, which changed his life. These exceptional encounters, the particular place people with Down Syndrome occupy, is what Maître Varault speaks of when talking about his son, François, who “does not define himself as a Down Syndrome child but as a child living with Down Syndrome, like others do with a cancer”. Maître Varault reminds the audience that “all parents whose children are sick have the same crutch: hope”.
And hope is represented by Patrizia Toia’s presence, who, again, promises her total support towards medical research on genetic intelligence diseases and speaks of her will to get the European Parliament to advance along that path.
It is then time for the scientists to be honoured at the roundtable, by a review of all the advances of the various studies: those of the ROCHE laboratory, Randy Hangerman’s work, the study ACTHYF led by the Jérôme Lejeune Institute and, finally, the clinical trial TESSDAD in Barcelona.
The day was concluded by the Sisley-Jérôme Lejeune and Jérôme Lejeune-Young Researcher Award ceremony during the inauguration of the “Jérôme Lejeune, a discovery for life” exhibition. In the very heart of the European Parliament, this event attracted a lot of people and allowed them to become aware of how vital medical research is. This gave Mara Dierssen the opportunity to remind them that the problem is that research on Down Syndrome is never a priority! Not rare enough, does not carry enough hope. That is NOT TRUE!
This March 10th is a sign of great hope for the patients living with Down Syndrome and for their families: researchers and politicians have at heart to work hand in hand to make medical research advance, and carry on the intuition Jérôme Lejeune had, because, as Thierry de la Villejégu, director of the Jérôme Lejeune Foundation, reminds us: “Against down Syndrome, there is no fate: the fecundity of Jérôme Lejeune’s hope is extraordinary”.