The day for parents and those accompanying people with genetic intellectual disabilities organized by the Jérôme Lejeune Institute on Saturday 20th September met with great success. Over 350 people, from all over France and abroad, responded to the invitation to a day of conferences and sharing between families, specialists and associations.
The theme: The accompaniment of people with an intellectual disability throughout the various stages of life.
The aim of this day of information was to help best apprehend the various stages of life that children with genetic intellectual disabilities have to go through (Down Syndrome, Smith Magenis, Fragile-X, Williams Beuren, Rett Syndrome, Cri du Chat Syndrome, Angelman Syndrome, Prader Willi Syndrome, etc.). The day was organized around 4 themes: early childhood (Pr. Marie-Odile Réthoré), learning at school (Elisabeth Bisbrouck), professional integration (Marie-José Villaret) and ageing (Dr. Michel Muir).
Meeting at the associations’ stands
Among the parents and those accompanying people with genetic intellectual disabilities who were present for this convivial day, half came from the Parisian region and the other half from Marseille passing through Lyon, Bourges, Reims, Angers, Vannes and Saint-Malo, but also from French overseas territories and from Luxemburg, Belgium and Maghreb.
The great majority shared their enthusiasm. The day, indeed, answered a need of the families to share, see they are not alone, receive advice and tie bonds with other families and professionals. The Jérôme Lejeune Foundation took it at heart to answer all the concrete interrogations of the participants. The families present largely turned to the speakers as well as the associations concerning the many questions they had on a medical level but also, more largely, concerning the social life of children with intellectual disabilities.