Jerome Lejeune Foundation USA at the European Parliament

On March 10th, the Jerome Lejeune Foundation in Paris organized a major event at the European Parliament in Strasbourg, France to highlight progress being made in Down syndrome research.

U.S. Foundation president, Mark Bradford, was asked to attend the event in order to share with members of the European Parliament what the U.S. government is doing to support those living with Down syndrome.

The NIH is often criticized for the disproportionately low level of funding it provides to researchers working in Down syndrome. Funding for Down syndrome research has ranged between $18 and $20 million for the last several years, and at present averages only about $72 per person. However, in spite of poor funding, there is a strong commitment by the staff at the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD) to those living with Down syndrome.

The following are some of the NIH programs Mr. Bradford shared with the European Parliament that support the Down syndrome community in the U.S.:

• - DS-Connect- An NIH-funded contact registry to gather un-identified medical data on those living with Down syndrome that will assist researchers in studying the disability.
• - Down Syndrome Directions: 2014 NIH Research Plan on Down Syndrome- A blueprint for research drafted in coordination with researchers, families, and advocates that sets research goals for the future.
• - The DS-Project- A private/public partnership that brings various Institutes and Centers of the NIH together with researchers and foundations to drive discoveries in Down syndrome research to treatment opportunities.
• - NICHD Brain and Tissue Bank for Developmental Disorders- The NIH has designated certain sites across the U.S. to collect specimens from deceased individuals and to make them available to the research community.
• - Jackson Labs Mouse Models contract- An arrangement with a major mouse lab to make mouse models of Down syndrome available to researchers.
• - NICHD and National Institute on Aging jointly funded grants of up to $5 million/year for researchers to identify biomarkers (early indicators) for Alzheimer’s disease in those with Down syndrome.
• - A working group to establish outcome measures for evaluating the success of clinical trials on drugs to improve cognition in Down syndrome.
• - The Trans-NIH Working Group on Down syndrome that consists of seven of the Institutes at the NIH that support Down syndrome research.
• - They NIH Down Syndrome Consortium, a group of research and advocacy organizations that meet biennially with the Trans-NIH Working Group to discuss issues relevant to the DS community. The Consortium also helps administer DS-Connect. The Jerome Lejeune Foundation USA is a member of the NIH Down Syndrome Consortium.

Advocates must continue to lobby for increased funding for research in Down syndrome, but it is important to acknowledge and to thank the committed group of administrators at the NIH who are working as effectively and as strategically as they can with the limited resources allocated to them.