Last May 10th, the Jérôme Lejeune Foundation was organising an exceptional day at the European Parliament. The aim? Add research on Down Syndrome to the European political agenda.
Taking stock of a crazy bet, that turned out just fine
The aim of this event chaired by the European deputy Miroslav Mikolášik and organised by the Foundation was to present to the European parliamentarians and commissioners the state of research in order for them to engage in fighting Down Syndrome thanks to therapy.
« I truly believe this is your day »
Conscious of the importance of the challenge and of the role Europe must play, Carlos Moedas, commissioner for Research, Innovation and Science, played a major part in this success thanks to his personal commitment. His exceptional presence, his talk as well as his testimony were as many signs of his will to truly get things moving. He spoke with great sincerity, speaking of his brother-in-law living with Down Syndrome, and describing him as “his best friend”, like someone “who made him a better man”.
He is fully aware that his role is to be at the service of the patients and researchers. He indeed repeated several times to Eléonore, who has Down Syndrome and is the spokesperson for the “Collectif des Amis d’Eléonore”: “I will do everything I can to help you. Never forget that you are truly extraordinary. (…) All this has been set up for you, not me.”
Hope as a crutch
Robin and Eléonore were there to talk about the various needs of those living with Down Syndrome. Spontaneously and with simple words, they once again said to the parliamentarians that they want a “drug to think faster”.
This is a need that was also expressed by the parents of children living with Down Syndrome. Alexandre Varaut, father of François indeed reminded the assembly that the families also are expecting the authorities to involve more seriously in the advances of research because for them, parents, “the only crutch is hope”.
And this hope became more concrete on March 10th thanks to the presence of influential figures, of whom Patrizi Toia, vice-president of the parliamentarian commission Research, Rosa Estaras Ferragut, vice-president of the Intergoup Handicap, and the researchers who exposed their first clinical results.
Therapeutic research on Down Syndrome is a reality. Europe has the means to make it progress faster. The Foundation gave the European Parliament a positive and reasoned message which needs to be turned into a strategy and a plan of action. The ball is on their side.