Archive for the ‘Press Releases’ Category

Menounos and Garcia to receive GLOBAL’s highest honor as celebrities unite to support life-changing research and care at the world’s largest Down syndrome fundraiser

DENVER, CO – Sept. 29, 2026 – The Global Down Syndrome Foundation (GLOBAL) is thrilled to announce that Academy Award-winning actor and disability inclusion advocate Geena Davis has joined an extraordinary celebrity lineup for its 2026 Be Beautiful Be Yourself Fashion Show on Saturday, November 7, at the Sheraton Denver Downtown Hotel.

A celebrated actor, author, producer and advocate, Davis has spent more than two decades pushing Hollywood to tell fuller, truer stories. In 2004, she founded the Geena Davis Institute, a research organization that measures who appears on screen and how, then works directly with studios and creators to close the gaps. What began as a focus on gender has grown to include people with disabilities and other communities too often left out of the picture. That mission is closely aligned with the Be Beautiful Be Yourself Fashion Show, where models with Down syndrome take center stage.

Maria Menounos and Kennedy Garcia will receive the Quincy Jones Exceptional Advocacy Award, GLOBAL’s highest honor, at the event, the largest Down syndrome fundraiser in the world. The Quincy Jones Exceptional Advocacy Award is named for the late music legend and longtime friend of the Sie/Whitten family and a devoted GLOBAL supporter, Quincy Jones. It recognizes individuals whose advocacy has meaningfully improved the lives of people with Down syndrome.

Menounos is an Emmy Award-winning journalist, TV personality, actor, New York Times best-selling author and digital entrepreneur. Her career includes becoming the youngest host of Entertainment Tonight, conducting the only sit-down interview with the Obama family and founding AfterBuzz TV, the streaming network that popularized digital TV after-shows. She is also a long-time supporter of Special Olympics and Best Buddies. Today she hosts the Noovie cinema pre-show, guest hosts Live with Kelly and Mark and hosts the daily podcast Heal Squad x Maria Menounos. The podcast is dedicated to helping others heal and improve their lives, a mission inspired by her own survival of brain tumor surgery.

Garcia made history as the first person with Down syndrome to have a recurring role on American daytime television, playing Felicity Greene on Days of Our Lives since 2024. She was discovered by American Girl as the brand’s first model with Down syndrome. Since then, she has appeared in campaigns for Disney, Instagram and McDonald’s, including the company’s 2023 Super Bowl campaign, and her acting credits include 9-1-1, Sesame Street and the award-winning short film Brownies. Garcia is an ambassador for Best Buddies International and Breaking the Chains Foundation and has spoken at more than 100 schools and colleges nationwide about inclusion, friendship and authentic disability representation.

“Every year, I am moved by the remarkable people who choose to stand with GLOBAL and the awesome people with Down syndrome we serve,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “Geena, Maria and Kennedy truly believe in GLOBAL’s work to increase lifespan and dramatically improve health outcomes and frankly we couldn’t do it without them and our celebrities who show up every year.”

“The Be Beautiful Be Yourself Fashion Show is joyful, glamorous and, I would even go as far as to say, magical. But it also raises life-saving funds that have helped drive historic progress, including a 10-year increase in life expectancy for people with Down syndrome,” continues Whitten. “As a parent, I cannot think of anything more important than 10 more birthdays. And our work is not done. We need another 10 years — and we need those years to be healthier. We’re so grateful to everyone helping us change the future for good.”

This year’s newly announced guests join first-time and returning celebrity supporters: six-time Olympic medalist Elana Meyers Taylor; NFL Hall of Famer Terrell Davis; award-winning actor John C. McGinley; Grey’s Anatomy actors Caterina Scorsone, Alexis Floyd, Niko Terho and Anthony Hill; actors Beverley Mitchell, Max Carver and Shelley Hennig; actor and model Amanda Booth; co-emcees and 9NEWS anchors Kim Christiansen and Phil Lipof; and Denver Broncos Cheerleaders Naomi and Renee.

The evening will also celebrate 2026 GLOBAL Ambassador Letizia Napoleone and is co-chaired by Edit & Tamas Viski-Hanka and Alexandra & Sean Swierczewski.

The 2026 event comes at a pivotal moment for GLOBAL’s government advocacy. The foundation is leading the bipartisan DeOndra Dixon INCLUDE Project Act, named for the late GLOBAL Ambassador DeOndra Dixon, sister of GLOBAL supporter and Academy Award- and Grammy Award-winning artist Jamie Foxx. The bill must be passed by the end of 2026 and would formally authorize the Down syndrome research program at the NIH called the INCLUDE Project.

When GLOBAL was founded, NIH funding was just $14 million a year. GLOBAL’s bipartisan advocacy resulted in the NIH INCLUDE Project in 2018, launching a renaissance in Down syndrome research that has driven more than $528 million in research investment over the past eight years.

The Be Beautiful Be Yourself Fashion Show, now in its 19th year, is the largest Down syndrome fundraiser in the world, and a major contributor to GLOBAL’s transformative work. More than 1,400 guests come together each year for an unforgettable evening featuring celebrities, inspiring models with Down syndrome, dinner, live and silent auctions, and powerful stories that celebrate the extraordinary contributions of people with Down syndrome.

Proceeds from the Be Beautiful Be Yourself Fashion Show support the important work of GLOBAL and GLOBAL’s affiliates, including a team of more than 400 scientists working on breakthrough life-saving research at the Linda Crnic Institute for Down Syndrome and the CU Alzheimer’s & Cognition Center; a dream team of medical professionals providing excellent medical care to more than 2,700 patients from 40 states, Puerto Rico and 10 countries at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado and the GLOBAL Adult Clinic at Denver Health.    

To learn more, visit: https://bebeautifulbeyourself.org/ and follow us on social media for updates: Facebook, X, Instagram, LinkedIn and YouTube.    

To sponsor a table or buy tickets, visit: https://bebeautifulbeyourself.org/be-beautiful-be-yourself-fashion-show-tables/ or https://bebeautifulbeyourself.org/be-beautiful-be-yourself-fashion-show-tickets/.    

For celebrity interviews, additional information, imagery, or to cover the Be Beautiful Be Yourself Fashion Show, please contact trishdavis0707@gmail.com. For more information on the Global Down Syndrome Foundation, please visit www.globaldownsyndrome.org.

Bill to authorize the first NIH-wide Down syndrome research program heads back to the House for final approval before advancing to the President’s desk

WASHINGTON, D.C., August 7, 2026 — Yesterday, the U.S. Senate unanimously passed the bipartisan DeOndra Dixon NIH INCLUDE Project Act (S. 1838), to authorize the National Institutes of Health’s INCLUDE Project—the first NIH-wide research initiative dedicated to improving the health and quality of life for people with Down syndrome.

Led by Senators John Hickenlooper (D-CO) and Jerry Moran (R-KS), yesterday’s Senate passage follows the July 20^th House of Representatives’ unanimous approval of companion legislation (H.R. 3491), led by Representatives Diana DeGette (D-CO) and Richard Hudson (R-NC). Now the bill heads back to the House for one final vote in September before it is sent to the President for his signature.

Established in 2018 after years of advocacy by the Global Down Syndrome Foundation (GLOBAL) and bipartisan leaders in Congress, the NIH INCLUDE Project has advanced groundbreaking research into Alzheimer’s disease, immune dysregulation and autoimmune conditions, sleep apnea, cancer, heart disease, liver dysfunction, metabolism, growth, and other serious health conditions while expanding clinical trial opportunities for people with Down syndrome from just two studies to fifteen.

The bill honors the memory and legacy of beloved GLOBAL Ambassador DeOndra Dixon – the inspiration for GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award, and a beloved presence at GLOBAL events alongside her big brother, Jamie Foxx, and their family.

“DeOndra brought so much joy, love and light into our lives, and she was incredibly proud to be a GLOBAL Ambassador and advocate,” says Academy Award-winning actor and Grammy Award-winning musician Jamie Foxx. “My family and I are deeply grateful to Michelle and the GLOBAL team, and to Senators John Hickenlooper and Jerry Moran for their leadership and commitment to passing the DeOndra Dixon INCLUDE Project Act. Knowing that DeOndra’s name and advocacy will help people with Down syndrome live longer, healthier lives means more to us than words can express.”

“Today’s Senate passage is an extraordinary bipartisan victory and brings us one major step closer to permanently protecting the first NIH-wide Down syndrome research program,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “We are profoundly grateful to Senators John Hickenlooper and Jerry Moran for their friendship, tenacity, and years of leadership, and to their colleagues on both sides of the aisle who recognized that people with Down syndrome deserve the same investment in research and opportunities to participate in clinical trials as everyone else. The DeOndra Dixon INCLUDE Project Act will honor our beloved GLOBAL Ambassador DeOndra Dixon and help ensure that the transformative progress made through INCLUDE continues. We look forward to working with our congressional champions to complete the final steps and see this landmark legislation signed into law.”

“Today is a historic day for the hundreds of thousands of Americans with Down syndrome and their families,” says Senator John Hickenlooper. “DeOndra Dixon was an extraordinary person and advocate whose legacy will help improve lives for generations. We’re proud the bill that bears her name will finally give Down syndrome research the investment it deserves, and we look forward to the breakthroughs it will deliver. We’re especially grateful to the Global Down Syndrome Foundation team and all of the tireless advocates who helped get this important bill across the finish line.”

“For years, I have asked Congress and the NIH to make people with Down syndrome a research priority because our lives are worth living—and worth investing in,” says Frank Stephens, GLOBAL board member, Ambassador, and Quincy Jones Exceptional Advocacy Award recipient. “The Senate’s passage of the DeOndra Dixon INCLUDE Project Act shows that our voices are being heard. I am grateful to GLOBAL, our congressional champions, and the NIH for helping us live longer, healthier lives, and I’m grateful for our Down syndrome community helping us to make this important bill become law.”

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest nonprofit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 40 states and 11 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 120 Down syndrome organizations worldwide and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

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 D.C., 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, X, Instagram, LinkedIn, and YouTube.

Media Contact:
Alex Lee, alee@globaldownsyndrome.org, 720-548-5631

Ambassador Letizia Napoleone and Co-Chairs Edit & Tamas Viski-Hanka and Alexandra & Sean Swierczewski to be honored at GLOBAL’s Be Beautiful Be Yourself Fashion Show on Nov. 7

DENVER, CO – July 30, 2026 – Today, Global Down Syndrome Foundation (GLOBAL) announced celebrities and honorees for their 19^th annual Be Beautiful Be Yourself Fashion Show – the largest Down syndrome fundraiser in the world.

The award-winning event will feature NFL Hall of Famer Terrell Davis, renowned film and TV actor, Scrubs & Rooster star John C. McGinley; beloved actress from the longest primetime TV drama on ABC, Grey’s Anatomy Caterina Scorsone; model and actress Amanda Booth; and award-winning local NBC anchors Kim Christiansen and Phil Lipof, who will emcee the event. GLOBAL expects to announce the full star-studded roster of celebrities and honorees in September. The mission-driven fundraiser, which sells out every year, will be held on Saturday, November 7^th at the Sheraton Denver Downtown Hotel.

“What GLOBAL and its affiliates have accomplished in research and medical care is nothing short of remarkable,” says Award-Winning Actor John C. McGinley. “They’ve helped transform Down syndrome research around the world and changed what’s possible for people with Down syndrome. As a GLOBAL Board member and father of my amazing son, Max, knowing we’ve helped increase life expectancy and improve health outcomes is incredibly meaningful. If you want to support an organization making a real difference every day, join us at the Be Beautiful Be Yourself Fashion Show and support GLOBAL.”

Proceeds from the Be Beautiful Be Yourself Fashion Show support GLOBAL’s mission to elongate life and significantly improve health outcomes for people with Down syndrome. With financial and advocacy support from this event, GLOBAL’s work has led to a 10-year increase in lifespan for people with Down syndrome, from 50 years in 2009 to 60 years today.

GLOBAL’s accomplishments include successfully advocating with Congress that has led to the first National Institutes of Health-wide Down syndrome research program focused on co-occurring conditions such as Alzheimer’s, cancer, immune system disorders and more. Together with its Affiliates, GLOBAL established and supports the Linda Crnic Institute for Down Syndrome, which has made major breakthroughs that are improving health span and lifespan, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, which provides specialized care to more than 2,700 pediatric patients from 40 states and 10 countries while setting the standard in translational research. GLOBAL also created and published the first evidence-based medical care guidelines for adults with Down syndrome.

“We are thrilled that our Be Beautiful Be Yourself Fashion Show received three ICON awards last year,” says GLOBAL President & CEO, Michelle Sie Whitten. “Celebrating and showcasing what people with Down syndrome can do is important but making sure we have the funds to ensure we gain another ten years of life, and quality of life, is our ultimate goal. We couldn’t do this without the celebrities and honorees who give so generously of their time. We’re so excited to share GLOBAL Ambassador Letizia’s incredible story and to honor our Co-chairs, who are working so hard to make sure the event is a financial success. We are so touched that they have taken on this role in memory of my dear mom.”  

The 2026 GLOBAL Ambassador, Letizia Napoleone, is a vibrant 23-year-old woman with Down syndrome who lives and works in New York City and is pursuing her acting education at Epic Players. An accomplished actor, model, and performer, she has appeared in campaigns for Clinique and London Fashion Week, been featured in Wallpaper and Harper’s Bazaar UK, and continues to build her career in film and the performing arts. Fluent in both Italian and English, Letizia embodies the international sprit of GLOBAL. She is also an accomplished athlete whose confidence, determination, and passion inspire everyone around her.

“I am so proud to be a GLOBAL Ambassador and to represent people with Down syndrome all over the world,” says Actor, Model and GLOBAL Ambassador Letizia Napoleone. “Fashion has given me the confidence to dream big, work hard and be myself. I hope everyone joins us at the Be Beautiful Be Yourself Fashion Show to celebrate our achievements, beauty, and capability as well as to emphasize that people with Down syndrome need longer and healthier lives to reach their true potential in an inclusive society.”

Longtime GLOBAL supporters Edit and Tamas Viski-Hanka are honored to serve as Co-Chairs of the year’s Be Beautiful Be Yourself Fashion Show alongside their daughter and son-in-law, Alexandra and Sean Swierczewski. Inspired by their cherished friendship with Anna and John Sie and years of witnessing GLOBAL’s transformative impact, the family is united by a shared commitment to advancing research, improving medical care, and creating a brighter future for people with Down syndrome.

“Our first Be Beautiful Be Yourself Fashion Show changed us forever,” says Co-Chair Edit Viski-Hanka. “The joy, love and spirit in that room were unlike anything we had ever experienced. Every year since, we’ve seen the extraordinary impact GLOBAL is making, through research, medical care, education and advocacy, and we are honored to help bring people together for an evening that truly changes lives.”

Each year, the Be Beautiful Be Yourself Fashion Show recognizes two leaders with their highest honor, the Quincy Jones Exceptional Advocacy Award, who have gone above and beyond to raise awareness and make a tangible difference for people with Down syndrome.

Past recipients include Jamie Foxx, DeOndra Dixon, Jane Lynch, Kevin Iannucci, Woody Harrelson, Sofia Sanchez, Bobby Farrelly, Madison Tevlin, Caterina Scorsone, Eric Dane, Jamie Brewer, Colin Farrell, Tim Harris, John Lynch, Zack Gottsagen, John C. McGinley, Karen Gaffney, Eva Longoria, Frank Stephens, Kyra Phillips and more.

GLOBAL’s advocacy and lobbying efforts with Congress and outreach to the National Institutes of Health (NIH) have resulted in an unprecedented increase of the national Down syndrome research budget, from $18 million in 2009 when GLOBAL was established to over $140 million today.

Proceeds from the Be Beautiful Be Yourself Fashion Show support the important work of GLOBAL and GLOBAL’s affiliates, including a team of over 400 scientists working on breakthrough life-saving research at the Linda Crnic Institute for Down Syndrome and the CU Alzheimer’s & Cognition Center; a dream team of medical professionals providing excellent medical care to over 2,700 patients from 40 states, Puerto Rico and 10 countries at the Anna and John J. Sie Center at Children’s Hospital Colorado and the GLOBAL Adult Clinic at Denver Health.

To learn more, visit: https://bebeautifulbeyourself.org/ and follow us on social media for updates: Facebook, X, Instagram,  LinkedIn, and YouTube.

To sponsor a table or buy tickets, visit: https://bebeautifulbeyourself.org/be-beautiful-be-yourself-fashion-show-tables/ or https://bebeautifulbeyourself.org/be-beautiful-be-yourself-fashion-show-tickets/.

For celebrity interviews, additional information, imagery, or to cover the Be Beautiful Be Yourself Fashion Show, please contact trishdavis0707@gmail.com, For more information on the Global Down Syndrome Foundation, please visit www.globaldownsyndrome.org.

New study in Nature Communications reveals unique molecular signatures associated with variable health outcomes

AURORA, Colo. (July 21, 2026) — In a groundbreaking new study published in Nature Communications, researchers from the University of Colorado Anschutz Linda Crnic Institute for Down Syndrome (Crnic Institute) discovered unique biological processes altered amongindividuals with Down syndrome who have different sets of co-occurring conditions. The findings mark an important step toward personalized treatment.

Biological differences are linked to co-occurring conditions of Down syndrome

The study is part of the ongoing Human Trisome Project™, one of the largest and most comprehensive studies of people with Down syndrome, including extensive clinical data, multi-omics data sets and the largest biobank for the study of this condition to date. The Crnic Institute team analyzed hundreds of blood samples to identify physiological differences across research participants with Down syndrome who have histories of medical conditions that are more prevalent in this population. They mapped changes in gene expression, protein levels, metabolite abundance and immune cell types across 100 different clinical traits, producing an unprecedented atlas of the processes underlying variable medical complexity in Down syndrome.

“These results decipher for the first time the conserved effects of the extra copy of chromosome 21 versus effects that are unique or exacerbated in people with Down syndrome that have other co-occurring medical conditions,” said Joaquín Espinosa, PhD, executive director of the Crnic Institute, professor of Pharmacology, principal investigator of the Human Trisome Project and senior author of the paper. “We know that no two individuals with Down syndrome are the samefrom a clinical standpoint, and now we can understand how this uniqueness reflects in their molecular, metabolic and immune profiles.”

“The number of discoveries produced by this analysis is spectacular,” said Micah Donovan,PhD, instructor of Pharmacology and a lead author of the study. “For example, this effort revealed the outsized effects of obesity in Down syndrome, whereby individuals with obesity display strong changes in key hormonal circuits, metabolism and systemic inflammation.“

The researchers used advanced computational tools to analyze the enormous volume of biological and clinical data generated through the study. The resulting dataset is expected to support many future investigations into the wide range of health outcomes experienced by people with Down syndrome.

“We found strong biosignatures of immune dysregulation and cardiac stress that persist throughout life in those with a history of specific congenital heart defects,” explained Srija Chilamcherla, MS, another lead author of the study. “These results pave the way toward the development of biomarkers that could help physicians monitor the lifelong effects of medical conditions that occurred earlier in life.”

The study team relied on a combination of self-reported medical histories and expert curation of medical records made available by self-advocates and their caregivers.

“This is a clear example of the power of research participation and data sharing by the community,” said Angela Rachubinski, PhD, assistant research professor of Pediatrics and director of the Clinical and Translational Sciences Program at the Crnic Institute. “Thanks to the contributions from research participants and their families, we have gained much–needed knowledge about the biological processes associated with co-occurring medical conditions more common in Down syndrome.”

Findings could enable future targeted therapies

The Crnic Institute study team has embarked on several follow–up studies aimed at accelerating the development of biomarkers of clinical utility and tailored therapeutic options for subsets of the Down syndrome population.

“This is another important breakthrough from our scientists at the Crnic Institute that we hope will lead to more personalized care and effective treatments for people with Down syndrome,” said Michelle Sie Whitten, president and CEO of Global Down Syndrome Foundation(GLOBAL), a partner and an affiliate organization of the Crnic Institute. “As a mother of a brilliant 23-year-old with Down syndrome, I am eager to understand how this new knowledgemay extend life and improve the health of millions of people with Down syndrome across the world. We are proud that GLOBAL’s advocacy efforts with Congress and the National Institutes of Health (NIH) led to the establishment of the NIH-wide Down syndrome funding initiative, the INCLUDE Project, which supports groundbreaking studies and clinical trials like this one.”

About the Linda Crnic Institute for Down Syndrome 
The Linda Crnic Institute for Down Syndrome is one of the only academic research centers fully devoted to improving the lives of people with Down syndrome through advanced biomedical research spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute supports a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook, Instagram, X, Bluesky and LinkedIn @CrnicInstitute. 

About the University of Colorado Anschutz
The University of Colorado Anschutz is a world-class medical destination at the forefront of transformative science, medicine, education and patient care. The campus encompasses the University of Colorado health professional schools, more than 60 centers and institutes and two nationally ranked independent hospitals – UCHealth University of Colorado Hospital and Children’s Hospital Colorado – which see more than two million adult and pediatric patient visits yearly. Innovative, interconnected and highly collaborative, CU Anschutz delivers life-changing treatments, patient care and professional training and conducts world-renowned research fueled by $910 million in annual research funding, including $757 million in sponsored awards and $153 million in philanthropic gifts. 

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest nonprofit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 40 states and 11 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 120 Down syndrome organizations worldwide and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

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 AcceptAbilityGala in Washington D.C., and the annual Be Beautiful Be Yourself Fashion Show, the largest Downsyndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, LinkedIn, and YouTube.

Landmark bipartisan legislation would permanently authorize the first NIH-wide Down syndrome research program and help ensure life-saving research continues for generations

WASHINGTON, D.C., July 21, 2026 — Following unanimous passage by the House Energy and Commerce committee in late May, the U.S. House of Representatives unanimously passed the DeOndra Dixon NIH INCLUDE Project Act (H.R. 3491) Monday evening.

Led by Representatives Diana DeGette (D-CO) and Richard Hudson (R-NC), the bipartisan legislation would permanently authorize the National Institutes of Health’s Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome, known as the INCLUDE Project.

The NIH INCLUDE Project is the first-ever NIH-wide initiative dedicated to advancing research to improve the health and quality of life of people with Down syndrome while accelerating scientific discoveries that benefit all Americans. The INCLUDE Project was originally established and appropriated through the bipartisan leadership of Chairman Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT). It has catalyzed discoveries related to Alzheimer’s disease, autoimmune conditions, sleep apnea, cancer, heart disease, liver dysfunction, and other co-occurring conditions that disproportionately affect individuals with Down syndrome.

The bill honors the life and legacy of DeOndra Dixon, who inspired people across the country and around the world through her advocacy, talent, warmth, and determination. DeOndra served as a GLOBAL Ambassador and was the inspiration for GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. A gifted dancer and musician, she performed at the 52nd Grammy Awards, delivered keynote speeches at national and international conferences, and was a beloved presence at GLOBAL events alongside her big brother, Jamie Foxx, and their family.

“There isn’t a day that goes by that our family doesn’t miss DeOndra, but today I know she is dancing in heaven,” says Academy Award-winning actor and Grammy Award-winning musician, Jamie Foxx. “My little sister brought so much love, joy, and light into this world, and she was really dedicated to helping people, checking in and seeing if they were okay. Seeing the House unanimously pass a bill bearing her name is an incredible honor and knowing the DeOndra Dixon INCLUDE Project Act will help people with Down syndrome live longer, healthier lives ensures that DeOndra’s legacy will continue to make a difference for generations. I am deeply grateful to GLOBAL and to the bipartisan leaders working to make this bill law.”

“GLOBAL is incredibly grateful for the overwhelming bipartisan support for the DeOndra Dixon INCLUDE Project Act and for the unanimous House passage,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “It is so important that we honor GLOBAL Ambassador DeOndra Dixon. This legislation will help preserve her extraordinary legacy by making the NIH INCLUDE Project permanent and ensuring that life-saving Down syndrome research will continue and grow. GLOBAL helped catalyze INCLUDE into existence as the first NIH-wide Down syndrome research program, and it is already transforming the field and improving health outcomes. We deeply appreciate the leadership and tenacity of Representatives Diana DeGette and Richard Hudson, and their bipartisan colleagues. Now we need the Senate to act so that this transformative bill can become law.”

GLOBAL advocated for an NIH-wide Down syndrome research program from its founding in 2009. In 2017, three GLOBAL leaders—Michelle Sie Whitten, Dr. Joaquin Espinosa, and self-advocate and GLOBAL board member Frank Stephens—testified before the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies at a landmark hearing on the state of Down syndrome research and its potential to advance understanding of other major diseases.

Following years of advocacy by GLOBAL, its families, self-advocates, scientists, medical professionals, and bipartisan congressional champions, Congress began funding the NIH INCLUDE Project in 2018.

“Today’s passage of the INCLUDE Project Act shows what we can achieve when we make Down syndrome research a true bipartisan priority,” says Congresswoman Diana DeGette. “By advancing this critical legislation, we are showing our commitment to improving health outcomes for individuals with Down syndrome. Colorado is already leading the way as home to the Global Down Syndrome Foundation and their affiliate, the Linda Crnic Institute—the largest institute for Down syndrome research in the world. When this bill becomes law, we will be doubling down on our commitment to groundbreaking science and to the Down syndrome community.”“People with Down syndrome enrich our families and communities in so many ways,” says Representative Richard Hudson. “I’m proud the House passed my bill to support research that can help them live longer, healthier lives and reach their full potential without barriers standing in their way.”The DeOndra Dixon INCLUDE Project Act was advanced by House lead sponsors DeGette and Hudson, together with original cosponsors Representatives Rosa DeLauro (D-CT), Tom Cole (R-OK), Eleanor Holmes Norton (D-DC), and Pete Stauber (R-MN), as well as additional bipartisan cosponsors: Paul Tonko (D-NY), Brittany Pettersen (D-CO), Angie Craig (D-MN), Jason Crow (D-CO), Joe Neguse (D-CO), Mark Pocan (D-WI), Ann Wagner (R-MO), Deborah Ross (D-NC), David Kustoff (R-TN), Suhas Subramanyam (D-VA), Jerry Nadler (D-NY), James Walkinshaw (D-VA) and Rob Wittman (R-VA).

GLOBAL recognizes former House Energy and Commerce Committee Chair Cathy McMorris Rodgers, whose leadership and personal commitment as the mother of GLOBAL Ambassador Cole Rodgers, helped build bipartisan momentum for the legislation in the previous Congress.

The legislation now moves to the U.S. Senate, where Senators John Hickenlooper (D-CO) and Jerry Moran (R-KS) are leading the bipartisan effort to secure passage.

GLOBAL urges the Senate to pass the DeOndra Dixon INCLUDE Project Act without delay and send it to the President’s desk.

Members of the public can learn more and contact their U.S. Senators at: https://www.globaldownsyndrome.org/deondra-dixon-include-project-act/

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 established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 40 states and 11 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 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

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, X, Instagram, LinkedIn, and YouTube.

Media Contact:
Alex Lee, alee@globaldownsyndrome.org, 720-548-5631