Down Syndrome: emphasis on therapeutic research!



Monday 19 November 2012

Sisley-Jérôme Lejeune Science Awards Thursday 22nd November

On Thursday 22 November, the Jérôme Lejeune Foundation and the Sisley Foundation will be giving out Sisley-Jérôme Lejeune Science Awards to “encourage and develop research on intellectual disabilities”. Following World Down Syndrome Day and during the National Conferences for Research and Higher Education, this event which focuses on the “OFF” programme, will introduce some talented international researchers.

“OFF” outside of the establishment
Research on intellectual disabilities suffers from a lack of public funding interest in research.

“OFF” as creative, Off the beaten track
Research on intellectual disabilities churns out ideas to overcome the difficulties linked to the complexity of anomalies found in target genes.

“OFF” as a forward-thinking development!
The researchers involved in this work allow us to offer prospects for autonomy to patients and to support their families.

The Sisley – Jérôme Lejeune International Prize will be awarded by Pr Saudubray (Honorary Professor in Paediatrics at Necker Enfants-Malades Hospital) to Roger Reeves, American researcher at Johns Hopkins University at McKusick-Nathans Institute for Genetic Medicine in Baltimore. He will also be awarded for his work which has improved cognitive functioning in people with Down Syndrome and for his commitment to creating a network of knowledge and information in this domain in the United States. He succeeds Pr William Mobley, from San Diego, honoured in 2011, and Pr Mara Dierssen, from Barcelona, in 2010.

The Jérôme Lejeune Young Researcher Prizes will be awarded to Maxime Fieschi from the Mediterranean Institute of Neurobiology (INMED) in Marseille and Damien Maréchal from the Institute of Genetics and Molecular and Cellular Biology (IGBMC) in Illkirch-Strasbourg. Both students in France have chosen to explore thesis subjects on genetic intellectual disabilities and the treatment options available.

As therapeutic research advances, public funding mainly goes towards screening. This year, the awards ceremony takes place at a worrisome time. Whilst those with genetic intellectual disabilities and their families get together to change people’s perspectives of disabled people, the Autumn 2012 review is harsh: News wire services are buzzing with the announced marketing in four neighbouring European countries of a new prenatal diagnostic test for Down syndrome (see press releases of 10 and 28 September at

It is not the technique which is questioned, but rather the use of this test and its role within the public health policy of France. One year after the reform of the law on bioethics, the forthcoming review on “the detailed report of public funding spent on researching cytogenetic abnormalities” (art. 24 of the law on bioethics of 7 July 2011) provides the new government with an opportunity to send a strong and positive message out to families and the world of research: screening only makes sense if treatment research advances. With 6 programmes for therapeutic use supported by the Jérôme Lejeune Foundation, including 4 clinical trials, and in particular by the talent rewarded on 22 November, therapeutic research is given the chance to materialise the hope that it raises.

Download the press release in PDF format

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