Self-advocates to Receive the Rosa DeLauro & Tom Cole Advancement Awards & Local Dancers with Down Syndrome Showcase Talents

Denver, CO, April 17, 2024 —

The Global Down Syndrome Foundation (GLOBAL) is honoring Congresswoman Lois Frankel (D-FL) and Congressman Richard Hudson (R-NC), who will receive the Quincy Jones Exceptional Advocacy Awards for their work in  support for those with Down syndrome, during its annual AcceptAbility Gala. The gala is an inspiring fundraiser event taking place at the Marriott Marquis in Washington, DC on May 9^th that features DC-area dancers who happen to have Down syndrome and other disabilities and a performance by Grammy-nominated, multi-platinum singer/songwriter and actress, Jordin Sparks.

“We are excited to highlight the extraordinary talents and gifts of people with Down syndrome at our AcceptAbility Gala.  It’s also a chance to honor those Members of Congress who have worked hard to ensure our community benefits from federally funded research that is improving their lives,” says Michelle Sie Whitten, President & CEO, Global Down Syndrome Foundation. “This year, we are thrilled to honor Rep. Hudson and Rep. Frankel for their unwavering support for people with Down syndrome and their families, and to thank Representatives Cathy McMorris Rodgers and Rosa DeLauro, both of whom will be in attendance, for their life-changing leadership.”

GLOBAL’s annual AcceptAbility Gala brings together policymakers from both sides of the aisle, key scientists from NIH, and the Down syndrome community. With GLOBAL’s leadership bringing together multiple stakeholders, the NIH Down syndrome research and medical care budget has increased by $338 million over the last six years. The AcceptAbility Gala is an opportunity to celebrate major new federal research funding increases after years of being one of the least funded genetic conditions and to educate Congress and the community about the transformative DeOndra Dixon INCLUDE Project Act of 2024 that will elongate life and improve health outcomes for people with Down syndrome.

During the gala, GLOBAL will honor 2024 GLOBAL Ambassador Isla Eager and her family from Arlington, Virginia and present the Rosa DeLauro & Tom Cole GLOBAL Advancement Awards to two self-advocates with Down syndrome. The awards come with a $1,000 each scholarship for post-secondary education. The 2024 Gala Chairs are Julie Riccio, Director of Regulatory Affairs and Public Policy, PwC, and Amy Best Weiss, Executive VP, Global Government Affairs, American Express. Congressional Hosts include Sen. Bob Casey, Sen. John Hickenlooper, Sen. Jerry Moran, Cong. Robert Aderholt, Cong. Katherine Clark, Cong. Tom Cole, Cong. Rosa DeLauro, Cong. Cathy McMorris Rodgers, Cong. Eleanor Holmes Norton, Cong. Pete Sessions, and Cong. Pete Stauber. This year’s event has 89 Members of Congress supporting it as well as the Honorary Congressional Committee. The AcceptAbility Gala is co-emceed by husband and wife team—Fox News’ John Roberts and ABC’s Kyra Phillips.

Other leaders who are participating include Frank Stephens, GLOBAL board member, GLOBAL Ambassador, self-advocate and actor, from Fairfax, VA; David Egan, Quincy Jones Awardee, gala event committee, self-advocate and author, from Vienna, VA; Robert Wallop, soloist dancer and self-advocate, from Annapolis, MD; Jan Adams, Founder & CEO JMA Solutions; Cory Alexander, Strategic Advisor, UnitedHealth Group; John Ashbrook, Founding Partner, Cavalry LLC; Kevin Brennan, Principal, Bluebird Strategies; Natalie Farr Harrison, SVP Government Relations, Avoq; Erin Book Mullen, Principal, Williams & Jensen, PLLC, Ed Mullen, Partner, Narrative Strategies; Matthew Perin, Head of Government Relations and Regulatory Affairs, Kroger; Cliff Riccio, Senior Vice President & Chief, Government Relations, NCTA; and Salo Zelermyer, Vice President for Federal Affairs and Counsel, Valero; and Dr. Joaquín Espinosa, Executive Director, Linda Crnic Institute for Down Syndrome.

The AcceptAbility Gala supports the Global Down Syndrome Foundation, funding life-changing research and lifesaving medical care for children and adults with Down syndrome. Down syndrome is the most frequent chromosomal condition, affecting an estimated 400,000 Americans, but it has been one of the least-funded genetic condition by NIH. GLOBAL is focused on raising funds to support research, educating the public about the discrepancy in research funding, and showcasing the abilities of those with Down syndrome. It is the largest US non-profit working to save lives and dramatically improve health outcomes for people with Down syndrome.

The AcceptAbility Gala starts at 6:00 p.m. with a reception and red carpet followed by dinner, a live auction, and performances by local individuals with Down syndrome and Jordin Sparks. Tickets start at $500 and can be purchased online at www.globaldownsyndrome.org. To cover the event or receive photos or b-roll, contact Shawn Flaherty at 703-554-3609. For more information, visit www.globaldownsyndrome.org. 

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About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,400 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and medical care. GLOBAL has a membership of over 110 Down syndrome organizations worldwide and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. GLOBAL’s widely circulated medical publications include GLOBAL Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning Down Syndrome World™ magazine. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

GLOBAL Quincy Jones Exceptional Advocacy Awardee and “Champions” Actress, Madison Tevlin, Delivers Another “Must See” Performance for World Down Syndrome Day

Denver, CO, Mar 27, 2024 — The Global Down Syndrome Foundation (GLOBAL) is proud to support the international awareness campaign video, “Assume That I Can,” that is taking the internet by storm! GLOBAL has financially sponsored and supported this annual campaign organized by CoorDown in Italy. This year’s campaign was created in collaboration with the New York-based agency SMALL.

The breakout star of the campaign video is “Champions” actress Madison Tevlin who received GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award in 2023. Madison and iconic film director Bobby Farrelly received their Quincy Jones Awards at the Be Beautiful Be Yourself Fashion Show, the largest fundraiser for people with Down syndrome in the world.

“We are so proud to be part of CoorDown’s annual awareness campaign video and to have Madison be the star of the film was just beyond perfect,” says Michelle Sie Whitten, GLOBAL President and CEO. “At GLOBAL we are working so hard to elongate life and improve health outcomes so we embrace this parallel theme of limiting perceptions. The video is exceptional, fantastic, wonderful – we hope it gets MILLIONS of views!”

World Down Syndrome Day falls on March 21^st or “3-21” signifying the fact that people with Down syndrome are born with 3 (three) copies of chromosome 21 instead of 2 (two). World Down Syndrome Day was promulgated by the United Nations in 2012 and is celebrated in 190 countries. 

To learn more about the Global Down Syndrome Foundation and World Down Syndrome Day, visit www.globaldownsyndrome.org/world-down-syndrome-day-month.

Hashtags: #AssumeThatICan #WDSD24 #WorldDownSyndromeDay #Endthestereotypes 

#downsyndromerocks #dsrocks #downsyndromelove #downsyndromeawareness #t21 #globalrocks #downsyndromeworld #downsyndrome #nonprofit #denvernonprofit

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,400 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and medical care. GLOBAL has a membership of over 110 Down syndrome organizations worldwide and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. GLOBAL’s widely circulated medical publications include GLOBAL Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning Down Syndrome World™ magazine. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

Self-Advocates with Down Syndrome Share Their Stories & Inspire the World

The Energy & Commerce Health Subcommittee Favorably Reported the DeOndra Dixon INCLUDE Project Act of 2024 with Unanimous Support

DENVER – March 12, 2024—The Global Down Syndrome Foundation (GLOBAL) praised the House Energy and Commerce Health Subcommittee for approving the DeOndra Dixon INCLUDE Project Act of 2024 (H.R. 7406), which would authorize the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE (INCLUDE) Project at the National Institutes of Health (NIH). 

The legislation will formally authorize a trans-NIH structure to ensure that major crosscutting issues and opportunities within Down syndrome research are identified and allow for multiple institutes to collaborate on a research plan. This will enable institute coordination to plan, fund, and share and disseminate research results that aim to improve health outcomes for those with Down syndrome.

GLOBAL is deeply grateful to their congressional champions who are co-sponsoring this important legislation: Representative Cathy McMorris Rodgers (R-WA) who formally introduced the game-changing DeOndra Dixon INCLUDE Project Act of 2024 with her colleagues Diana DeGette (D-CO), Tom Cole (R-OK), Rosa DeLauro (D-CT), Pete Stauber (R-MN) and Delegate Eleanor Norton Homes (D-DC) as original cosponsors.

2024 House Committee on Energy & Commerce Health Hearing: “Legislative Proposals To Support Patients And Caregivers

GLOBAL will be launching a digital campaign  this week to encourage supporters to contact their Representatives, tell their personal stories, and let them know that passing  this bill this year is imperative and important Visit www.globaldownsyndrome.org/advocacy for more information.

“Working with Congresswoman Cathy McMorris Rodgers has been one of the greatest honors of my life,” says Michelle Sie Whitten, GLOBAL President & CEO. “With this bill, named in memory of our beloved Ambassador DeOndra Dixon, Congresswoman McMorris Rodgers is helping to create a powerful future for a population that has been largely ignored and neglected. With her unwavering commitment and leadership, and with wonderful bipartisan support, our champions are ensuring the INCLUDE Project and Down syndrome research funding remains a national priority and that we will see increased lifespan and improved health as a result.”

Having advocated for the establishment of INCLUDE, GLOBAL continues to advocate for additional funding and programs that would help some of the most vulnerable populations within the Down syndrome community: including those living in rural America, Black or African Americans with Down syndrome and other minorities. There is some research that points to a significant disparity in lifespan for Black or African Americans with Down syndrome as compared to a Caucasian with Down syndrome.

The INCLUDE Project was established via congressional directive in 2018 after a seminal first-in-kind House Appropriations Labor, Health and Human Services, and Education Subcommittee hearing led by then-Chairman Cole Tom Cole and Ranking Member Rosa DeLauro. Congresswoman McMorris Rodgers was a key supporter at the hearing and testified along with Crnic Institute for Down Syndrome Executive Director, Dr. Joaquín Espinosa, and GLOBAL Board Member and self-advocate, Frank Stephens. Frank’s testimony that day, which included the famous phrase, “I am a man with Down syndrome and my life’s worth living,” went viral to 1 million views that day and today stands at well over 200 million.

Dr. Espinosa’s testimony focused on the fact that people with Down syndrome have a very different disease profile whereby they are highly predisposed to certain diseases (for example Alzheimer’s and certain autoimmune diseases) and highly protected from others (for example solid tumors). He also presented his groundbreaking study that categorizes Down syndrome as an immune system disorder and how by studying people with Down syndrome we can not only improve their lives but the lives of millions of others who suffer from diseases.

Before Congress began funding the NIH INCLUDE Project, Down syndrome was one of the least funded genetic conditions by the NIH despite being the leading cause of developmental delay in the U.S. and around the world. For nearly two decades the funding had languished between $16 million and $20 million even during years when there was a double-digit growth of the NIH budget. In 2023, the estimated INCLUDE budget is $144 million. GLOBAL’s advocacy goal is to increase funding to over $250 million a year.

GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has five clinical trials specifically for patients with Down syndrome: Two in Alzheimer’s and Down Syndrome, one in Down Syndrome Regression Disorder, and two in autoimmunity and inflammation.

To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website at: https://includedcc.org/.

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,200 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).