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 

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.”

Michelle Sie Whitten & The Dixon/Foxx Family

“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 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). 

Denver, CO, Jan 25, 2024 (GLOBE NEWSWIRE) — The Denver Business Journal (DBJ) 40 Under 40 Awards program announced last week that Michelle Sie Whitten, the Co-Founder, President & CEO of Global Down Syndrome Foundation (GLOBAL), will be inducted into the DBJ 40 Under 40 Hall of Fame on Thursday, March 7, 2024 at the Infinity Park Event Center, 4400 E. Kentucky Ave, Glendale, CO 80246.

Denver, CO, Jan 18, 2024 (GLOBE NEWSWIRE) — Today, the Global Down Syndrome Foundation (GLOBAL) announced that Dr. Joaquín Espinosa, leader of its Affiliate, the Linda Crnic Institute for Down Syndrome (Crnic Institute) at the University of Colorado Anschutz Medical Campus, was awarded an Anschutz Acceleration Initiative (AAI) grant that will fund a pioneering clinical trial aimed at normalizing the immune system and decreasing inflammation in children with Down syndrome.

The award will fund the clinical trial proposal, “Immunomodulatory Therapy in Down Syndrome,” led by Espinosa and his team at the Crnic Institute, building on their groundbreaking discovery in 2016 that interferon signaling does not shut down in people with Down syndrome as it should, and the health consequences of that are multifold. That discovery was made possible through the establishment of the biorepository and database called the Crnic Institute Human Trisome Project^TM that was funded in 2013 by the University of Colorado School of Medicine (CU SOM) on the Anschutz Medical Campus (CU Anschutz), the Anna & John J. Sie Foundation, and the Global Down Syndrome Foundation (GLOBAL).

“Receiving this grant is deeply gratifying,” says Dr. Joaquín Espinosa, Professor in Pharmacology and Executive Director of the Crnic Institute. “Everyone at the Crnic Institute, GLOBAL and all our Affiliates have worked so hard in the last ten years to take our remarkable findings from the Petri dish and parlay that into benefit for people with Down syndrome. This generous funding for a clinical trial grant from The Anschutz Foundation, CU Anschutz and the CU SOM could very well lead to a new age of therapeutic development to improve the quality of life and extend lifespan for millions of individuals with Down syndrome.”“This project is an outstanding example of the leadership role academic medical centers provide in supporting fundamental research, developing discoveries into treatments, and moving treatments into clinical care,” said John J. Reilly, Jr., MD, Dean of the University of Colorado School of Medicine. “I am hopeful that this trial will provide a new therapy for individuals with Down syndrome that will improve their quality of life.”

“GLOBAL looks forward to helping Dr. Espinosa and his team raise additional funds for this transformative clinical trial grant and to providing outreach to our families,” says Michelle Sie Whitten, president & CEO of GLOBAL. “It truly does take a village and we simply could not do this without our amazing self-advocates, families, scientists, philanthropists like the Anschutz family, and of course our Congressional and NIH Champions.” 

Down syndrome is a genetic condition where someone is born with three copies of chromosome 21 instead of two. It is often referred to as trisomy 21 (T21) and it is the most common chromosomal abnormality and a leading cause of intellectual and developmental disability worldwide.

The clinical trial funded by the AAI award will pave the way for the first immunomodulatory therapy for children with Down syndrome using a class of medicines known as JAK inhibitors. Key outstanding questions specific to individuals with Down syndrome will be addressed:

• What are the impacts of interferon hyperactivity during early childhood?
• How early during childhood could JAK inhibition be safely administered for therapeutic benefit?
• What are the long-term effects of JAK inhibition?

While a year of testing safety for the drugs in children participants is the first step, assuming positive results, this could launch a new age of therapeutic development to improve the quality of life and extend the lifespan of millions of individuals affected by T21. These efforts also position the University of Colorado Anschutz Medical Campus at the forefront of a burgeoning field of therapeutic development for complex genetic pediatric conditions.

The AAI was created with a $50 million gift from The Anschutz Foundation to rapidly advance medical treatments and health innovations to make a transformational impact on patient care. Established at the CU SOM, CU Anschutz Chancellor Don Elliman and Dean of the CU SOM John J. Reilly, Jr., MD, announced the grantees late last week. From over 165 letters of intent and ultimately 56 full proposals, 9 research projects were funded.

Dr. Espinosa is the Primary Investigator for the grant, and he has brought together a stellar team of professionals who have been participating in the Crnic Institute Down Syndrome Grand Challenge Grants and the Down Syndrome Super Group for years. They include: Robert C. Fuhlbrigge, MD, PhD, Professor, Pediatric Rheumatology; Jessica Bloom, MD, MSCS, Assistant Professor, Pediatric Rheumatology; Gabriel Tarshish, MD, Assistant Professor, Pediatric Rheumatology; Deborah Fidler, PhD, Professor, Human Development and Family Studies, Colorado State University; Lina Ramesh Patel, PsyD, Associate Professor, Psychiatry; Ryan Kammeyer, MD, MSE, Assistant Professor, Pediatrics and Neurology; Angela Rachubinski, PhD, Assistant Research Professor, Developmental Pediatrics; Kelly Sullivan, PhD, Assistant Professor, Pediatrics; Matthew Galbraith, PhD, Assistant Research Professor, Pharmacology.

The eight other AAI grants were awarded to:

1. Implementation of Personalized Skin Cancer Screening: Using Genetic & Clinical Risk Factors to Identify a High-Risk Subgroup
2. Making Personalization the Standard Through Rapid Design, Implementation, Testing and Maintenance
3. Multimaterial 3D Print Processing of Antimicrobial and Antifungal Dental Prosthetics
4. MyD88 Platform for Enhancing Cellular Cancer Immunotherapy
5. Oculomics as a Biomarker for Comprehensive and Non-Invasive Patient Health Assessment
6. Retinal Transplant to Restore Vision in Patients with Macular Degeneration
7. Targeting Protein Translation Elongation to Treat Cancer Patients
8. Transforming Gastrointestinal Cancer Care from Inpatient Surgery to Outpatient Endoscopy by Enabling Third Space Endoscopy

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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).