NDSS works to create and maximize federal research funding opportunities across the federal government. The largest funder of biomedical research is the National Institutes of Health (NIH). NDSS is actively working to increase research funding for Down syndrome at NIH, and other federal departments and agencies. The fiscal year 2012 annual NIH budget for Down syndrome is $22 million. NDSS commends NIH, especially the Eunice Kennedy Shriver National Institute for Child Health & Human Development (NICHD), for its leadership and ongoing efforts to implement the NIH Down Syndrome Research Plan, which is supported through funding efforts by NIH, and the current federal efforts underway to build research infrastructure (i.e., a patient registry and biobank) and capacity for Down syndrome across the country.
People with Down syndrome have an increased risk for certain medical conditions, including far higher rates of childhood leukemia, heart defects, severe digestive tract issues, and sleep apnea. Moreover, research indicates the incidence of Alzheimer's disease in people with Down syndrome is estimated to be three to five times greater than that of the general population, which according to the Alzheimer’s Association is now estimated to be 5.4 million people.
In light of the exciting research being done on Down syndrome and other associated medical conditions, NDSS is pleased that NICHD leads and convenes the NIH Working Group on Down Syndrome and NIH Down Syndrome Consortium to collaborate and convene the various NIH Institutes and Centers doing Down syndrome research.
Congressional Momentum Around Down Syndrome Research Funding & Priorities
In the spring of 2012, NDSS advocated and was successful in securing FY 2013 appropriations report language included in the Senate Labor-Health & Human Services (L-HHS) report to help advance the research priorities for Down syndrome at NIH. This Senate report language encourages NIH to establish the Down syndrome contact registry, clinical research database, and biobank, update the current NIH Research Plan on Down syndrome.
In May 2012, the US Department of Health & Human Services (HHS) published the first-ever National Plan to Address Alzheimer’s Disease, which underscores the relationship between Down syndrome and Alzheimer’s disease, and includes a focus on improving care for populations that are disproportionally affected by Alzheimer's disease like Down syndrome. The plan also establishes a taskforce to take steps towards addressing the unique care challenges faced by people with younger-onset Alzheimer's disease, and improve access to long-term services and supports for younger people, including those with Down syndrome.
The first draft that was released by HHS did not mention Down syndrome. NDSS, along with the Down syndrome research community, encouraged HHS to include Down syndrome throughout all elements of the plan. On April 17, NDSS Board Member and Self-Advocate Sara Wolff provided remarks before the HHS Advisory Council on Alzheimer's Research, Care, and Services in Washington, DC Wolff talked about the importance of including Down syndrome in the National Alzheimer's Plan.