Fw: NDSC, NDSS and GDSF Respond to Decrease in NIH Funding

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R. Green

IMDSA Legislative Officer

IMDSA.org

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Subject: NDSC, NDSS and GDSF Respond to Decrease in NIH Funding

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February 23, 2012 

National Down Syndrome Congress

30 Mansell Court

Suite 108

Roswell, Georgia 30076

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DOWN SYNDROME ORGANIZATIONS EXPRESS DISAPPOINTMENT IN FEDERAL FUNDING DECREASE

FOR PEOPLE WITH DOWN SYNDROME

    

2011 National Institutes of Health Report Shows Down Syndrome Remains the Least

Funded Genetic Condition

  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©(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 the 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©(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  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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