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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.

GLOBAL Experts Educate Families, Advance Collaboration, and Break Attendance Records at the DSAIA Leadership Conference and NDSC Annual Convention

The GLOBAL Down Syndrome Foundation (GLOBAL) was proud to spend an inspiring and impactful week in Orlando, Florida, joining thousands of advocates, families, researchers, healthcare professionals, and community leaders for the Down Syndrome Affiliates in Action (DSAIA) Leadership Conference and the National Down Syndrome Congress (NDSC) Annual Convention at the Signia by Hilton Orlando Bonnet Creek.

The week began with the DSAIA Leadership Conference, where more than 140 executive directors, board members, and staff from local Down syndrome organizations across the country gathered to learn, collaborate, and strengthen their collective impact. This year’s conference marked an important milestone as it was the first DSAIA event since NDSC Executive Director Jim Hudson announced the merger of DSAIA and NDSC—a significant step toward building a stronger, more unified national network serving individuals with Down syndrome and their families.

Under the leadership of Jim Hudson and Tiffany Williams, DSAIA’s new Program Coordinator, the two-day pre-conference created valuable opportunities for affiliate organizations to exchange ideas, share best practices, and develop new partnerships. Throughout the conference, the GLOBAL team presented multiple research & medical care sessions, reinforcing its commitment to improving healthcare, advancing research, and empowering organizations that serve the Down syndrome community.

GLOBAL Roundtable Sets New Attendance Record

One of the week’s highlights was the annual GLOBAL Roundtable, proudly sponsored by Glaukos, which welcomed a record-breaking 400 attendees. Since its inception, the Roundtable has educated more than 5,000 self-advocates, parents, caregivers, and healthcare professionals, making it one of the convention’s premier educational events.

As one of GLOBAL’s longest-standing collaborations with NDSC, the Roundtable continues to be a valuable benefit included with NDSC Annual Convention registration. Attendees consistently rate the program an outstanding 4.8 out of 5, reflecting both the quality of the presentations and the practical information families can immediately apply.

The Roundtable opened with welcoming remarks from NDSC Executive Director Jim Hudson, GLOBAL President and CEO Michelle Sie Whitten, GLOBAL Vice President for Research and Medical Care Bryn Gelaro, and self-advocate and public speaker Elizabeth Romanick, setting the stage for a full day of cutting-edge education and meaningful discussion.

This year’s impressive lineup of internationally recognized Down syndrome experts included:

• Joaquín Espinosa, PhD, Executive Director, Linda Crnic Institute for Down Syndrome — Research Breakthroughs Accelerating Personalized Medicine for Down Syndrome
• Melissa Parisi, MD, PhD, Chief of the Intellectual and Developmental Disabilities (IDD) Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development — NIH INCLUDE Project: How Researchers and Families Are Working Together to Support Health Across the Lifespan
• Lauren Ptomey, PhD, RD, LD, Associate Professor and Registered Dietitian, University of Kansas Medical Center — Evidence-Based Strategies for Weight Management in Adolescents and Adults with Down Syndrome
• Mary Pipan, MD, Director of the Trisomy 21 Program at Children’s Hospital of Philadelphia — The Complexity of the GI Tract in Down Syndrome: From Esophagus to the Rectum, It’s All One Tube
• Allison Meyer, PhD, Director of Psychology at the Sie Center for Down Syndrome at Children’s Hospital Colorado — Supporting Emotion Regulation in Down Syndrome
• Nick Gagner, DMD, Senior Dental Director at Denver Health and dentist at the Denver Health GLOBAL Adult Down Syndrome Clinic — More Than Teeth: Systemic Health, Access Barriers, and Oral Care for People with Down Syndrome

The presentations highlighted the latest advances in medical care, research, nutrition, behavioral health, oral health, and personalized medicine, providing attendees with practical, evidence-based information that supports healthier lives across every stage of the lifespan.

The impact of the Roundtable was perhaps best captured by one returning attendee.

“So much hit home this year!” said Paula, a parent from Louisiana who has attended the GLOBAL Roundtable at NDSC for multiple years. “It’s like GLOBAL tapped into my adult child’s medical records! Thank you for hosting!”

Advancing Research Beyond the Classroom

Research & medical care education wasn’t the only focus during convention week. GLOBAL affiliates and NIH INCLUDE-funded researchers from the Linda Crnic Institute for Down Syndrome were onsite enrolling participants into the Human Trisome Project, helping expand one of the most important research initiatives dedicated to improving health outcomes for people with Down syndrome.

Researchers and clinicians from Boys Town National Research Hospital also conducted hearing research during the convention, giving families the opportunity to contribute directly to studies that will improve care for future generations.

In addition to the Roundtable, GLOBAL affiliates remained busy throughout the convention. Team members participated in the Down Syndrome Medical Interest Group-USA Annual Symposium, met with self-advocates during the NDSC Youth & Adult Conference, and delivered 13 educational sessions covering topics that ranged from pediatric healthcare updates and Alzheimer’s disease clinical trial readiness to a preview of the forthcoming second edition of the Adult Medical Care Guidelines for Adults with Down Syndrome.

Looking Ahead

The excitement and momentum generated throughout the week reinforced the importance of bringing together families, self-advocates, clinicians, researchers, and community leaders to learn from one another and continue advancing the future of Down syndrome research and care.

GLOBAL is already looking forward to continuing this tradition next year, when the DSAIA Leadership Conference and NDSC Annual Convention head to Denver, Colorado. As the home of GLOBAL, the Linda Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the Alzheimer’s and Cognition Center, and the Adult Clinic, Denver will provide an exciting backdrop for another unforgettable week of education, collaboration, groundbreaking research, and community.

This July, twelve self-advocates have returned to GLOBAL’s Education Center to participate in the fourth annual Fitness Program, a six-week program specifically designed to increase balance, muscle tone, flexibility, and endurance in individuals with Down syndrome. 

The GLOBAL Fitness Program aims to:

1. Introduce participants to effective exercise techniques and methods
2. Improve participants’ ability to safely incorporate exercise and healthy habits into daily routines
3. Provide participants a positive and encouraging experience with exercise

This year, the program has been strengthened through a partnership with CrossFit Tackle Bunny made possible by Kroenke Sports Charities, giving participants the opportunity to learn new skills in a supportive and encouraging environment. Alongside GLOBAL Staff, seasoned coach and CrossFit Tackle Bunny owner Jason Cline is leading participants in learning functional movements from the CrossFit discipline.

Participant Andrew Regan shares that to him, the Fitness Program means “inclusion”. By offering exercises that meet participants where they are while still encouraging them to build new skills and try new things, the program creates an environment where everyone knows that they belong. Four weeks into the program, participants are excelling in a variety of exercises with the support of volunteers and coaches who use modeling and verbal instruction to improve participants’ technique.

Every program session begins with a warm-up, a review of previous skills, and an introduction to new movements. Participants then challenge themselves through the AMRAP training format, which stands for “as many reps as possible”. In week one, participants completed a four-minute AMRAP; by week four, they are progressing to eight-minute AMRAPs and completing as many as six sets of each exercise. From push-ups and strict presses to RDLs and broad jumps, participants push themselves through every minute of every session, proving that fitness is for everyone.

“The program keeps changing me in a good way to become more active and to be more confident and let loose,” says participant Sam Levin. Levin also says that his favorite part about class is being able to work out alongside friends. With twelve participants engaged in each class session, the program is an important opportunity for participants to support one another in achieving fitness goals while simultaneously building meaningful friendships. Opportunities before, during, and after class help participants further strengthen connections and practice social skills in a natural, welcoming setting.

While it may seem like just a workout session on the outside, the GLOBAL Fitness Program is an unprecedented opportunity for individuals with Down syndrome to build lifelong wellness skills that will support healthier, more active lives.

About the GLOBAL Education Center

The mission of the Education Center at Global Down Syndrome Foundation (GLOBAL) is to enrich the lives of individuals with Down syndrome by providing quality, evidence-based learning opportunities at little to no cost. Since 2022, the Education Center at GLOBAL has engaged more than 80 participants with Down syndrome in educational programming focused on health and wellness, jobs skills acquisition, and skills for greater independence. Each program is developed in partnership with experts in the field and specifically tailored for the unique needs of its participants. Pre- and post-program assessments are conducted to gauge program effectiveness, participant and family satisfaction, and alignment with GLOBAL’s overall mission to improve the lives of individuals with Down syndrome.

Programs in the Education Center are made possible by the support of the Daniels Fund, Salah Foundation, Kroenke Sports Charities, the Safeway Foundation, the Church of Jesus Christ Latter-Day Saints, and the Lowe Fund at the Denver Foundation.

The Education Center is currently home to four annual programs, including the Cooking & Nutrition Program, Social Program, Fitness Program, and Stewardship Program. With the generous support of donors, GLOBAL has also had the opportunity to host a Hospitality Training Program, Computer Skills Program, and Morning Social & Healthy Habits Program. Programs are offered for participants who are residents of Colorado and are free for families. As capacity allows, GLOBAL hopes to expand program offerings in the Education Center to better support our mission of improving the lives of individuals with Down syndrome through research, medical care, education, and advocacy.

To see how you can support and get involved with the Education Center as a volunteer or participant, email EducationCenter@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