GLOBAL DOWN SYNDROME FOUNDATION CELEBRATES THE TRIPLING OF THE DOWN SYNDROME RESEARCH BUDGET AT THE NATIONAL INSTITUTES OF HEALTH
It was standing-room-only at the sold-out annual AcceptAbility Gala, benefitting the Global Down Syndrome Foundation (Global) at the Hilton Washington DC National Mall last week. The evening highlighted the National Institutes of Health (NIH) reversing a twenty-year trend and tripling the research budget benefitting people with Down syndrome. The event raised nearly $350,000 for life-saving and life-changing medical care and research.
“We were thrilled when the director of the NIH, Dr. Francis Collins, recently presented an estimate of nearly $80 million for Down syndrome research in FY2019 to the Senate Labor Health and Human Services, Education and Related Agencies Sub-Appropriations Committee,” said Michelle Sie Whitten, Global Down Syndrome Foundation President and CEO. “Dr. Collins is one of our many heroes at the NIH who believes in our science and that the 400,000 American citizens who happen to have Down syndrome are equal under our laws and deserving of so much better. But we still have a long way to go to rebuild the pipeline of Down syndrome research and achieve parity.”
The gala honored Global Ambassador CC Mullen, and recognized Senator Roy Blunt (R-MO) and Representative Cheri Bustos (D-IL) with Global’s Quincy Jones Exceptional Advocacy Award (Q-Award).
Three previous Q-Award winners helped ring in the evening. Congresswoman Cathy McMorris Rodgers (R-WA) provided moving, opening remarks with her 12-year old son who happens to have Down syndrome, Global Ambassador Cole Rodgers, by her side. Congressman Tom Cole (R-OK) and Congresswoman Rosa DeLauro (D-CT) introduced the 2019 honorees, underscoring the great contributions that Sen. Blunt and Rep. Bustos have made to the Down syndrome community and all those who are differently-abled.
Global Ambassador CC Mullen is currently battling leukemia and was unable to attend. CC was represented by her parents, Ed and Erin Mullen. Erin’s speech received two standing ovations. “I am a mom of a child who is ten times more likely to get childhood leukemia, among many other diseases and health challenges. This is just one reason why medical research for individuals with Down syndrome is important,” Erin shared. “To work with Global, our congressional champions, and self-advocates on the first-ever Congressional hearing on Down syndrome research was one of the best experiences of our lives. I got to hold CC in my lap, witness a standing ovation for Frank Stephen’s testimony, and later see the results be the first significant increase in Down syndrome research funding in nearly 20 years. My experience with Michelle and the Global team makes me believe without a doubt that things can change and that we can all make a difference.”
Rep. McMorris Rodgers agreed, “Michelle and I have been on this journey for 12 years now for Cole, Sophia, and millions of people with Down syndrome. Research about Down syndrome has so much to offer not just those with Down syndrome, but the world. Global and Dr. Espinosa at the Crnic Institute are making sure that everyone understands that we can help cure Alzheimer’s, cancer and so many life-threatening diseases if we invest properly in Down syndrome research.”
Reps DeLauro and Cole emphasized the successful, bi-partisan effort around Down syndrome research and medical care. Global’s Q Awardees Blunt and Bustos provided an insight into the greater framework within which people with Down syndrome can succeed.
“Global and the Crnic Institute, the Mullen family and all those with Down syndrome, everyone in this room tonight, is taking on a worthy cause and battling for what is right. This battle is truly bipartisan. And only by working together can we make sure that every person with Down syndrome has the resources they need to live a happy, productive, and dignified life. That’s our goal,” said Rep. DeLauro.
“Every American has a special and unique role to play in our communities, and those who face challenges deserve an extra dose of support from their communities. Republican or Democrat, this is something we can all agree on,” said Rep. Cole. “During this year’s AcceptAbility Gala, I am proud that my colleagues Senator Roy Blunt and Congresswoman Cheri Bustos were honored for their advocacy on behalf of those Americans in the Down syndrome community. Certainly, this is bipartisan work we can all be proud of.”
“It was a tremendous honor to be a part of this year’s AcceptAbility Gala. In the subcommittee I chair, we have worked together in a bipartisan, bicameral way to boost federal funding for medical research by $9 billion over the past four years,” said Senator Blunt. “I appreciate all that the Global Down Syndrome Foundation does to bring together families, advocates and supporters who are working hard to make sure Down syndrome remains a research priority. An event like this doesn’t just bring awareness, it inspires all of us to make sure differently-abled people are recognized for their achievements and given the opportunity to continue accomplishing great things in their lives.”
“I know a young girl with Down syndrome who was diagnosed with Lyme disease. Clinicians were at a loss as to how to treat her and Dr. Espinosa jumped in to help,” said Rep. Bustos. “We obviously need to understand more about what appropriate care is for people with Down syndrome. We also need to keep pushing important financials vehicles such as the ABLE act. There is so much more we can and should be doing for people with Down syndrome.”
The AcceptAbility Gala was capped off with an inspirational set by The Ransom Notes musical trio from Nashville, and an intimate and heart-felt performance by multi- platinum pop artist, Andy Grammer. The award-winning musician related to the cause immediately and even helped organize two unified dance troupes, RhythmXpress and Devenio, to choreograph dances to his first two certified Gold songs - Good to be Alive and Keep Your Head Up.
Grammer was truly touched by the event, “There are a lot of emotions around this topic, but the real work is getting to DC and getting into the true mechanics of how to create real change. And the Global Down Syndrome foundation is creating real change.”
Chief White House correspondent at Fox News, John Roberts was the gala’s emcee. Honorary Committee members included Representatives Eleanor Holmes Norton (D-DC), Pete Stauber (R-MN), Cathy McMorris Rodgers (R-WA), Michael Bennet (D-CO), Cory Gardner (R-CO), Elizabeth Warren (D-MA), Tom Cole (R-OK), Diana DeGette (D-CO), Rosa DeLauro (D-CT), Barbara Lee (D-CA), and Senators Steve Daines (R- MT) and Roy Blunt (R-MO). Key sponsors include Kroger, American Express, JMA Solutions, MasterCard, PhRMA, US Travel Association, Visa, Wells Fargo, and the Mullen Family.
To learn more about Global’s AcceptAbility Gala and the Quincy Jones Exceptional Advocacy Award, visit: https://www.globaldownsyndrome.org/acceptability-gala/
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About Global Down Syndrome Foundation
Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to saving and transforming 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 with Denver Health. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook and Twitter @GDSFoundation, Instagram @globaldownsyndrome).
- Erin Mullen, Cheri Bustos, Rosa DeLauro, Michelle Sie Whitten
- Erin Mullen, Roy Blunt, Michelle Sie Whitten, Tom Cole
Anca Call Global Down Syndrome Foundation (720) 320-3832 email@example.com Shawn Flaherty (703) 554-3609 firstname.lastname@example.org