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Global invited back to testify before Congress – funding benefiting people with Down syndrome in the balance


“I want to thank you again for your testimony and for your advocacy, which has been extraordinary and has really made an enormous difference in the lives of literally thousands and thousands of individuals and families.”
“There really aren’t many reasons why we shouldn’t see more focus on Down syndrome than we have in recent years so it’s our hope and expectation that that will happen.”

    – Chairman Tom Cole (R-OK)

“You could have easily taken care of your own child, … but what you’ve chosen to do is really extraordinary: to take this experience and to be responsible for thousands and thousands and thousands of youngsters who are out there. That really is in another element.”
“The key is the research and what you’re doing is exactly the right thing … Your advocacy and that of families and others out there will make a difference.”

    – Ranking Member Rosa DeLauro (D-CT)


Ed Mullen | emullen@georgetowngroup.com | 202-329-4855
Anca Elena Call | acall@globaldownsyndrome.org | 720-320-3832

Global Down Syndrome Foundation Testifies at the FY2019 Public Witnesses Hearing and Thanks House Subcommittee on Labor, Health and Human Services, Education and Related Agencies

Testimony focuses on reversing two decades of decreased and flat funding and positive new language in the 2018 Omnibus Bill

WASHINGTON, D.C. – Thursday, April 26th – The Global Down Syndrome Foundation (Global) thanked Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT) for inviting its President and CEO, Michelle Sie Whitten, to testify at the House Subcommittee on Labor, Health and Human Services, and Education and Related Agencies FY2019 Public Witness Hearing. Whitten provided a five minute testimony on the importance of increased funding for Down syndrome research and highlighted the twenty year decline and flat funding for the condition.

Whitten testified, “For Global and the Down syndrome community, our hope is that this esteemed committee can help us to ensure that the National Institutes of Health (NIH) will take advantage of the generous $3 billion in new funding included in the FY2018 Consolidated Appropriations Act…In particular, we hope that the funding of research benefitting people with Down syndrome will increase significantly from FY2017 to FY2018 and then again from FY2018 to FY2019, and that the increase will be seen in both the current pipeline of Down syndrome research and the new trans-NIH Down syndrome research initiative.”

Last year, with support from Reps. McMorris Rodgers, Sessions, Bustos and Coffman, and under the leadership of Cole and DeLauro, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held the first ever hearing on current and future research funding priorities for people with Down syndrome where Global also testified and presented compelling Down syndrome research.

As a result of that historic hearing, in March of 2018, Congress included funding for the new trans-NIH initiative to study Down syndrome in the Fiscal Year 2018 Omnibus Appropriations legislation. The provision, supported by Global, directs the NIH Director to lead a groundbreaking new scientific initiative to study immune system dysregulation and trisomy 21, with the aim of yielding research discoveries to improve the health of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, and autism, among others.

The FY2019 Public Witness Hearing on Thursday, April 26th was held at the Rayburn Building on Capitol Hill on Thursday, April 26th and featured twenty-one important advocacy groups listed below:

American Alliance of Museums, Elder Justice Coalition, Institute for Higher Education Policy, Boys & Girls Clubs of Oklahoma County, Inc., Global Down Syndrome Foundation, American Association of Nurse Practitioners, Alzheimer’s Association and Alzheimer’s Impact Movement, The Christopher & Dana Reeve Foundation, Center for Key Populations at Community Health Center, Inc., National Association of State Long-Term Care Ombudsman Programs, Michigan Works! Association, National Association of County and City Health Officials, Alliance for Biosecurity, National AHEC Organization, Coalition for Health Funding, Susan Chacon, President, Association of Maternal & Child Health Programs, American Dental Association, National Indian Health Board, American Association of Colleges of Nursing, National Council for Community and Education Partnerships, Trust for America’s Health

For the most current, accurate information and resources associated with people with Down syndrome, visit www.globaldownsyndrome.org/facts.

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Supporting the research of hundreds of scientists around the world, and through our advocates, partners and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remains focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. To learn more, visitwww.globaldownsyndrome.org.

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