National Down Syndrome Congress, National Down Syndrome Society, and Global Down Syndrome Foundation express disappointment in federal funding decrease for people with Down syndrome

Down syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in every 691 babies in the US is born with Down syndrome).  The funding for research benefitting people with Down syndrome at the NIH started a continual and precipitous decline in the year 2001.

Even compared to other intellectual and developmental disabilities or comorbidities, Down syndrome has been funded anywhere between 3x and 11x less on a per capita basis year on year.

It is important to educate our representatives in DC, with the NIH and other federal and local organizations in terms of how basic, clinical, developmental and educational research benefits people with Down syndrome and their families. In order to reverse the lack of funding for people with Down syndrome we must advocate strongly but do so in a spirit of partnership and cooperation.  To read more about how the Global Down Syndrome Foundation is working with NIH click here.


Denver, Atlanta, New York – On Monday, February 13, 2012 the National Institutes of Health (NIH) published the fiscal year 2011 research funding for Down syndrome. The funding numbers decreased from $22 million in 2010 to $20 million in 2011 out of a total $31 billion budget. The 2010 funding levels already equated to Down syndrome being the least funded genetic condition by the NIH, something many Down syndrome organizations have been trying to reverse.

In a joint statement by the National Down Syndrome Congress, National Down Syndrome Society and Global Down Syndrome Foundation, the Down syndrome community expressed its disappointment in the decrease.

“We are very disappointed the funding levels for research from the NIH have not increased, but in fact decreased. Prominent scientists believe the research for improving health and cognition is extremely promising.

The Down syndrome community feels strongly about better medical care and outcomes for people with Down syndrome. Mainstream Americans overwhelmingly support federal funding for Down syndrome, as evidenced by a 2011 poll.

While funding for other conditions such as Fragile X and Cystic Fibrosis increased, funding for Down syndrome at the National Institutes of Health is significantly less and has plummeted since 2000, as evidenced by numbers published by the NIH.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, childhood leukemia, thyroid conditions, and Alzheimer’s disease. Researchers are studying proteins related to human chromosome 21 and Alzheimer’s disease that would reduce the level of the protein and lead to improvements in cognition for individuals with Down syndrome. While these groundbreaking developments, supported primarily by private funding, are positive achievements, both government funding and clinical research infrastructure support are vital to our efforts to translate research achievements into real treatments and therapies.

We hope given these realities that research funding benefiting the lives of people with Down syndrome will increase at the NIH. We are grateful for the funding that has been provided so far and will continue to collaborate with the NIH in meeting our collective goals for increased funding.”

About the National Down Syndrome Congress
Founded in 1973, the National Down Syndrome Congress is the country’s oldest organization for people with Down syndrome, their families, and the professionals who work with them.  A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.  Best known for its annual convention – the largest of its type in the world – the National Down Syndrome Congress is a grassroots organization recognized for its “family” feel, its “We’re More Alike than Different” public awareness campaign, and, its outreach to individuals from diverse backgrounds.

About National Down Syndrome Society
The National Down Syndrome Society is a nonprofit organization with more than 350 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national advocate for the value, acceptance, and inclusion of people with Down syndrome. We demonstrate this commitment through our advocacy and public awareness initiatives that benefit people with Down syndrome and their families.

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation is a public non-profit 501(c)(3)  dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy.  Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the US committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal.  The Foundation organizes the Be Beautiful Be Yourself Fashion Show – the single largest annual fundraiser benefitting people with Down syndrome.  Programmatically the Foundation organizes and funds many programs and conferences including the Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, and Global Down Syndrome Multi-Language Resource Project.  The Foundation is an inclusive organization without political or religious affiliation or intention.

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