Important NIH INCLUDE Legislation Aimed at Increasing Lifespan and Dramatically Improving Health Outcomes for People with Down Syndrome Introduced by GLOBAL Champion, Congresswoman Cathy McMorris Rodgers

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The DeOndra Dixon INCLUDE Project Act of 2024, named after GLOBAL Ambassador and Quincy Jones Exceptional Advocacy Awardee DeOndra Dixon, is co-sponsored by Representatives Diana DeGette, Tom Cole, and Eleanor Holmes Norton

GLOBAL Ambassador and Quincy Jones Exceptional Advocacy Awardee DeOndra Dixon

Left: DeOndra Dixon, Dr. Diana Bianchi & Michelle Sie Whitten; Right: DeOndra Dixon & Congresswoman Cathy McMorris Rogers
Left: DeOndra Dixon, Dr. Diana Bianchi & Michelle Sie Whitten; Right: DeOndra Dixon & Congresswoman Cathy McMorris Rogers

The Dixon Family & Michelle Sie Whitten

2012
2012

Denver, CO, Feb. 08, 2024 (GLOBE NEWSWIRE) — The Global Down Syndrome Foundation (GLOBAL) is thrilled to share the news that long-time GLOBAL champion Representative Cathy McMorris Rodgers (R-WA) formally introduced the game-changing DeOndra Dixon INCLUDE Project Act of 2024 with Representatives Diana DeGette (D-CO), Tom Cole (R-OK) and Delegate Eleanor Norton Homes (D-DC) as original cosponsors.

The legislation to formally establish the INCLUDE (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) Project at the National Institutes of Health (NIH) is the culmination of years of tireless advocacy led by GLOBAL and including self-advocates with Down syndrome and their families, scientists and medical care professionals, and champions in Congress and at NIH.

“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.”

“We are forever grateful to GLOBAL for creating such purpose for our little sister DeOndra,” says Academy Award-winning actor and DeOndra Dixon’s brother, Jamie Foxx. “My sister Deidra and I are so proud of the big difference she made through her advocacy in DC, and now with this bill she will continue to make a difference. There isn’t a day that goes by that we don’t miss her, but today I know she’s dancing up in heaven because this legislation is named after her and will help millions of people with Down syndrome.”

“DeOndra loved to help people and to advocate for people less fortunate,” says Mr. George Dixon, DeOndra’s father. “I remember DeOndra keynoting alongside Congresswoman Cathy McMorris Rodgers and Congressman Patrick Kennedy, and she was cracking everybody up with her jokes. Anyone who has met DeOndra knows she was a pistol – articulate, funny, smart and the most loving person I have ever known. We are so happy that this important bill is named after our little angel. People with Down syndrome deserve better, and this bill is a big step in the right direction.”

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 disease (for example Alzheimer’s and certain autoimmune diseases) and highly protected from others (for example solid tumors). He also presented his groundbreaking study that allows us to categorize 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 directed NIH to create the 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 WorldTM. 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). 

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CONTACT: Anca Call Global Down Syndrome Foundation (720) 320-3832 [email protected] 

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