Funding Increases for the National Institutes of Health (NIH) and Down Syndrome Research Lauded by Global Down Syndrome Foundation

Photo by Marleen Van den Neste

Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

December 22, 2019, Denver, CO– On Friday, President Trump signed a $1.4 trillion spending package that will fund the government until September 2020 and averted a government shutdown. Earlier in the week, the package passed the House and Senate with victories and compromises on both sides of the aisle.

“Finally, we have secured the funds and resources for our military — our national security,” said Senator Richard Shelby (R-AL), Chairman of the Senate Appropriations Committee who also heads the appropriations subcommittee on defense. “This package includes a significant increase in defense funding and the largest pay raise in a decade for our men and women in uniform.”

Chairwoman of the House Appropriations Committee Nita Lowey was also pleased with the results, “I am particularly proud that House Democrats prevailed in securing historic investments For the People, including record funding levels for Head Start and lifesaving medical research at NIH, and in funding priorities vital to our shared security, like gun violence prevention research and election security grants to states.”

Included in the spending package was legislation providing a 7% increase or $2.6 billion more funding to the NIH for an annualized budget of $41.7 billion. Legislation also highlights a “minimum” of $60 million for Down syndrome research in FY2020 through NIH’s Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) trans-NIH project. This would bring total Down syndrome research funding up to $98 million for the year.

Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation, issued the following statement:

“Global thanks the Administration, our champions in Congress, and leadership at NIH who made Down syndrome research and medical care a priority resulting in the NIH INCLUDE project. It is important to note that this result reflects a decade of hard work and two decades of inequity in funding for our Down syndrome community.

The key turning point was the Labor, Health and Human Services, Education and Related Agencies House Appropriations Subcommittee hearing on Down syndrome research in October 2017. At the hearing, testimony from Global Ambassador, Frank Stephens, received a standing ovation, 100% bipartisan support, and over 150 million views on C-Span and other outlets.

This first ever hearing of its kind and testimonies were made possible by Congresswoman Cathy McMorris Rodgers, Chairwoman Rosa DeLauro, and Ranking Member Tom Cole with further support from Senators Roy Blunt, Patty Murray, and so many others from both sides of the aisle.

The FY2020 budget for NIH and Down syndrome research signals a clear message that the longevity and improved health outcomes of people with Down syndrome is important, and that their unique disease experience can also benefit others without Down syndrome. Global is proud and incredibly grateful to have worked with the Administration, NIH, and Congress to secure the funding for this research.”

The INCLUDE project focuses on diseases and conditions like Alzheimer’s, blood cancers, and autoimmune disorders that have a higher prevalence among individuals with an extra copy of chromosome 21 as well as conditions like solid tumor cancers that are rare among individuals with Down syndrome. The INCLUDE Steering Committee is chaired by Dr. Lawrence Tabak, NIH Principal Deputy Director in partnership with Dr. Diana Bianchi, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and Dr. Gary Gibbons, Director, National Heart, Lung, and Blood Institute (NHLBI) as co-chairs.

To learn more about the NIH INCLUDE project, visit https://www.nih.gov/include-project/include-project-research-plan#leadership

To learn more about the Crnic Institute for Down Syndrome, visit https://medschool.cuanschutz.edu/linda-crnic-institute

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

About 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. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome, the Rocky Mountain Alzheimer’s Disease Center, the Anna and John J. Sie Center for Down Syndrome, and a new pilot Adult Clinic. Global invites its supporters to celebrate over a decade of milestones in helping people with Down syndrome at their Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.

Celebrities vow to raise awareness and funds for life-saving and transformative medical care & research at Global’s Be Beautiful Be Yourself Fashion Show

Top Row (L-R): Quincy Jones, Henry Winkler, Laura Linney, Terrell Davis, Charlotte Fonfarra-LaRose; Bottom Row (L-R): Eric Dane, Shamari and Ronnie Devoe, John C. McGinley, Amanda Booth, Megan Bomgaars

Press Contacts:
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832

Denver, CO (October 22, 2019) – Today the Global Down Syndrome Foundation (Global) announced Emmy Award-winning actor, producer, and director Henry Winkler; Academy Award-nominated and award-winning television and film actress Laura Linney; NFL Hall of Famer Terrell Davis, and R&B royalty and husband-wife dream team Shamari and Ronnie DeVoe will join its celebrity lineup for the 11th annual Be Beautiful Be Yourself Fashion Show at the Sheraton Denver Downtown Hotel, 1550 Court Place, on Saturday, November 2. The marquee event is the largest Down syndrome fundraiser in the world.

Winkler, Linney, Davis, and the DeVoes will join Global in honoring their 2019 Quincy Jones Exceptional Advocacy Award (Q-Award) winners and stars, Amanda Booth and Megan Bomgaars. Both women are passionate advocates for the differently-abled community, and Megan herself has Down syndrome.

Other confirmed celebrities for the Be Beautiful Be Yourself Fashion Show include: music legend and inspiration behind the Q-Award, Quincy Jones; Global board member and award-winning actor John C. McGinley; award-winning actor Eric Dane; Q-Award winner DeOndra Dixon; U.S. Squad World Cup team member and Colorado Rapids player Kellyn Acosta; supermodel and Instagram influencer Mikaela Hoover; 2019 Miss Colorado Monica Thompson; and Denver Broncos cheerleaders Jozie, McKenna, and more.

Twenty-three models with Down syndrome from around the world, traveling from as far as India and London, will rock the runway with celebrity escorts. At the event, Global will also honor the 2019 Be Beautiful Be Yourself Ambassador Charlotte Fonfara-LaRose, while celebrating the return of past Ambassadors and Q-Award winners: DeOndra Dixon and Clarissa Capuano.

For over a decade Global has funded transformative and life-saving research and medical care through its affiliates – the Linda Crnic Institute for Down Syndrome and the Rocky Mountain Alzheimer’s Disease Center both at University of Colorado Anschutz Medical Campus, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

Since Down syndrome is one of the least funded genetic conditions by the National Institutes of Health (NIH), Global depends on fundraising events to underwrite important work. This work includes Global’s lobbying Congress and outreach to NIH which has resulted in nearly a tripling of the NIH Down syndrome research budget – from $27 million in 2016 to $77 million in 2019.

“We are excited to share that Global’s unabating and difficult work in Washington, D.C. continues to succeed with the promise of elongating life and dramatically improving health outcomes for people with Down syndrome,” says Global President and CEO, Michelle Sie Whitten. “This wouldn’t be possible without the funds raised at the Be Beautiful Be Yourself Fashion Show and the support of our amazing donors, dedicated Congressional and NIH Champions, passionate self-advocate and families, and our brilliant researchers and medical professionals.”

Various levels of Be Beautiful Be Yourself Fashion Show tickets, table sponsorships, and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.

About Global Down Syndrome Foundation

Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global is part of a network of affiliates who work together to deliver on our mission, supporting hundreds of scientists and medical care professionals. Our affiliates include the Sie Center for Down Syndrome, the Crnic Institute for Down Syndrome, Rocky Mountain Alzheimer’s Disease Center and a new pilot Adult Clinic. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).

As the nation celebrates Down Syndrome Awareness Month, the Global Down Syndrome Foundation recognizes and thanks our friends and partners in Congress, the President and the White House, and the National Institutes of Health (NIH) for making Down syndrome a national research priority by significantly increasing research funding for FY2019 federal budget and going forward.

We are grateful to our congressional leaders who have championed Down syndrome research, which is one of the least funded genetic conditions at the NIH. The efforts of House and Senate Appropriations Labor-Health and Human Services Chairwoman Rosa DeLauro (D-CT), Ranking Member Tom Cole (R-OK), Chairman Roy Blunt (R-MO) and Ranking Member Patty Murray (D-WA) will improve the health and well-being of every person with Down syndrome as well as typical Americans living with and at risk for other diseases and genetic conditions, such as Alzheimer’s disease, cancer, and autoimmune disorders.

Further, by holding the first ever congressional hearing on Down syndrome research, that included the moving testimony of Representatives Cheri Bustos (D-IL) and Cathy McMorris Rodgers (R-WA), the American people gained a greater understanding of how harnessing the full power of the NIH and the national biomedical research enterprise will directly lead to improved treatments and eventually cures for these diseases that effect a majority of Americans. Global is honored and deeply grateful to you many other representatives including: Jaime Herrera Beutler (R-WA), Pete Stauber (R-MN), Lucille Roybal-Allard (D-CA), Barbara Lee (D-CA), Mark Pocan (D-WI), Katherine Clark (D-MA), Lois Frankel (D-FL), Andy Harris (R-MD), John Moolenaar (R-MI) and Tom Graves (R-GA) for championing Down Syndrome Research at NIH.

In his recent statement recognizing Down Syndrome Awareness Month, President Donald J. Trump spoke about the importance of “an inclusive Nation, one where Americans with Down syndrome are embraced in schools, workplaces, and communities—one where discrimination can no longer cast a shadow of inequality.” We thank the Administration for affirming its commitment to Down syndrome research and for joining us in celebrating the lives of those with Down syndrome.

Global Down Syndrome Foundation is an inclusive organization. We encourage and appreciate people from all walks of life to support children and adults with Down syndrome.

Global is outraged!

Macy Lace, a nine-year-old girl with Down syndrome who is immobile, has been denied a walking frame from the National Health Service (NHS) in the UK. This denial left Macy unable to do physiotherapy for 18 months after intensive hip surgery, which her mother says reverses any progress she had been making to walk.

Macy was able to obtain a walking frame a local education service, but it can only be used during school hours. Her doctors say that if she uses her walking frame at home and at school, she can quickly develop the strength to walk.

Global Down Syndrome Foundation works hard every day to ensure Down syndrome research gets its share of funding for our children and adults to receive proper medical care. Discrimination against one person with Down syndrome is discrimination against all people with Down syndrome.

Left to Right: Dr. Vellody and his brother Das present Dr. Joaquin Espinosa with 2019 President’s Award

The Global Down Syndrome Foundation was honored to accept the prestigious President’s Award at the 2019 NDSC Annual Convention. Presented at the Annual Convention Opening Session, Global was awarded for their dedication to Down syndrome research, their unprecedented advocacy work, and their tremendous positive impact on the Down syndrome community. Global’s longstanding relationship with the National Down Syndrome Congress will continue to flourish and together, they will work to improve the lives of individuals with Down syndrome.

GAME DAY
Saturday, June 22nd, 2019
10:30AM – 1:30PM
Valor Christian High School
3775 E Grace Blvd, Highlands Ranch, CO 80126

Left to Right: Michael A. Clemens (President, CU Anschutz Student Senate); Linda Shoemaker (CU Regent, District 2 – Boulder); Michelle Sie Whitten (President & CEO of Global Down Syndrome Foundation); Donald M. Elliman, Jr. (Chancellor, University of Colorado Anschutz Medical Campus); Bruce D. Benson (President of the University of Colorado)

Global President & CEO, Michelle Sie Whitten, was honored to accept the CU Regents Distinguished Service Award at the University of Colorado Anschutz Medical Campus Spring Commencement. Linda Shoemaker presented her award, stating that “Whitten’s tireless pursuit of excellence in care, research, and advocacy has yielded better lives for all, and her commitment to the University of Colorado is today honored by the CU Board of Regents and the CU community with the Distinguished Service Award.”

View the Photos | View the Program

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At Global, we were shocked about the suggestions to cut the already scarce funding for students with special needs (12% of our students BTW!) and to completely defund Special Olympics. This past week, we saw our congressional heroes fiercely support maintaining funding, including leadership from both sides of the aisle – Congresswoman Rosa DeLauro (D-CT) and Senator Roy Blunt (R-MO) (both Global’s Q-Award Winners). THANK YOU!

We are pleased that Congress and President Trump heard the concerns of those who are differently-abled and that the government will continue to support the incredible Special Olympics program. PLEASE make sure you also safeguard funding for our students with special need in public school who deserve a chance to learn and reach their potential!