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21 March 2013, 2nd World Down syndrome Day

Published on 08/27/2013 in Press releases


Thursday 21 March 2013

D-DAY: Eléonore takes the mike!

Eléonore Laloux, a young woman with Down syndrome, a figure head of the "Down syndrome ... So what!" campaign is interviewed today by the United Nation as radio after a statement by Ban Ki-Moon calling on people to " Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies ". She will be appearing tonight's television on Grand Journal de Canal +.

On 21 March 2013, the 2nd World Down Syndrome Day was held (officialised by a UN resolution). The purpose of this event is to arouse awareness and inform people about this little-known pathology and the prejudice of which people affected by it suffer. This day is of singular and urgent importance.

Indeed, the standardisation of prenatal diagnosis of Down syndrome, the leading intellectual disability of genetic origin (is 1 conception out of 700) is leading to the elimination of the great majority of children detected to be Down syndrome during pregnancy. The figure is particularly alarming in France where 96% of foetuses are eliminated. With new detection tests now being marketed, stigmatisation and rejection will increase even more. This eventuality will become a fact in France in just a few months. Our country offers an enormous market to the developers of these tests because the supply is now general and the practice is automatic.

The problem is worsened since no State in the world has set up a health policy offering a positive therapeutic solution to the patients and their families. Efforts undertaken to ease the way to school and professional integration of Down syndrome persons are far from sufficient.

In 2013, whatever their nationality, European citizens need future-looking, positive and human messages to help them accommodate and bring up a disabled child. Families who already have a Down syndrome child also need collective welcoming messages, which never come.

With this in mind, 15 European associations (France, Spain, Portugal, Croatia, United Kingdom, Germany, Italy, Poland and Latvia), Russian, American and New Zealander, are getting this campaign going internationally: Down syndrome... So what!

With different national and cultural contexts, 5 persons with Down syndrome, of different ages (a young child, a young woman, two young men, an older man) are making an appeal to the citizens and political officials of their countries. They want to demystify the pathology affecting them, in an attempt to quell fears and fantasies. Their mischievous and joyful expressions aim at informing society that happiness is possible.

On 21 March, the Fundación Síndrome de Down de Madrid, Canal Down21, Fundación Iberoamericana Down21 (Spain), APPT21, Olhar 21 (Portugal), Down Syndrome Center Pula (Croatia), Down Syndrome Development Trust (United Kingdom), Coor Down (Italy), Arbeitskreis Down-Syndrom e.V. (Germany), Opole Association for Helping Children with Down Syndrome (Poland), Dauna Sindroma Biedriïba (Latvia), Down side up (Russia), Jérôme Lejeune Foundation USA (United States), Saving Downs (New Zealand), Les Amis d’Eléonore group and Jérôme Lejeune Foundation (France) all participate in the need to stressfully reaffirm this forgotten fact: Down syndrome... So what!

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