On the occasion of World Down Syndrome Day, Wednesday, March 21 next year, which was recently recognised by the UN, the Jérôme Lejeune Foundation is a partner to two major lines of inquiry into the sector and policies of Down syndrome.
- First a poster campaign in the Paris region to raise awareness of Down syndrome
- Secondly, a conference on 16 March at the Economic, Social and Environmental Council (ESEC)
Each of these events raises a fundamental question about the place given to the person with Down syndrome, and more broadly to the disabled and the weak.
Furthermore, on the occasion of this World Day, the Foundation emphasizes that the research into the treatment of intellectual disability due to Down syndrome has advanced considerably: five clinical trials are currently underway in the world*.
The question surrounding the way people view Down syndrome is a societal issue of primary importance, and it is becoming more pressing than ever to answer it, just as much for the patients and the families as for society as a whole. To be challenged on this question, to be informed and educated about the reality of this disease are necessary in France. From this perspective the Jérôme Lejeune Foundation is a partner in two major events on the occasion of the day of March 21, 2012.
March 21: World Down Syndrome Day
The International Day of Down syndrome on March 21, 2012 was recognised for the first time by a UN resolution establishing "World Down Syndrome Day" as March 21. The date of 21/03 is highly significant, making a direct reference to the three chromosomes 21 that cause the syndrome and mental retardation of Down syndrome patients. The purpose of this day is to educate and inform people about Down syndrome.
February 27 to March 14: Large poster campaign "Down Syndrome, so what?"
On the occasion of this day, the Jérôme Lejeune Foundation is pleased to partner with the poster campaign “Down Syndrome, so what?” Based on the original idea of an association in Madrid, this campaign is carried out in turn in France by a group of parents of Down Syndrome children, who wanted to gather in order to make heard a strong message of awareness and convey a positive image to society. The "Down Syndrome so what?" campaign aims to demystify Down syndrome, to question the general public about their attitude to it, and finally allow a true integration of people who are affected by it. It is represented by large posters on rollouts in Paris and the Paris region for two weeks before 21 March. Advertisements are also planned in the coming weeks. All costs are covered generously by advertisers and other participants thus allowing this event to take place. A great outpouring of generosity testifying to a possible mobilisation and a shared desire to change the attitude towards Down syndrome.
16 March: Questioning of presidential candidates during a conference at the ESEC
The group “The Friends of Eléonore”. In the days preceding the World Down Syndrome Day, and a few weeks before the presidential election, the Foundation also participates on 16 March – from 3:00 PM to 7:00 PM – in a colloquium at the Economic, Social and Environmental Council on the theme “Down syndrome: an ethical issue. What is the urgency for the politicians?”. Sponsored by Jean-Paul Delevoye, organised by the group The Friends of Eleonore and open to all, this event provides for the intervention of experts from the medical, legal, scientific and ethical world, among whom Christel Prado (UNAPEI), Emmanuelle Prada Domaine BORDENAVE (ABM), Didier Sicard (CCNE) are included.
Fifty years ago, a French researcher, Professor Jerome Lejeune, discovered the cause of Down syndrome. More than 15 years after its widespread use, prenatal screening, itself, today leads to 96% of Down syndrome foetuses to be aborted. In 2012, as the era of therapeutic trials has arrived*, and non-invasive prenatal tests are poised to make their appearance on the market, a political choice is required. The current situation is not satisfactory: what common response does our society bring to Down syndrome? What is society’s plan for the most vulnerable people and those with disabilities? On the occasion of the World Down Syndrome Day, the Foundation Jerome Lejeune takes part in these challenges to query those who can act.