Archive for the ‘Press Releases’ Category

U.S. Senate Passes DeOndra Dixon INCLUDE Project Act

August 7th, 2026 by Tara Zeman

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 20th 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

 

Celebrities Terrell Davis, John C. McGinley & Caterina Scorsone Join the Largest Down Syndrome Fundraiser in the World

July 30th, 2026 by Tara Zeman

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 19th 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 7th 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.

Crnic Institute Landmark Research Paves the Way for Personalized Medicine in Down Syndrome

July 24th, 2026 by Tara Zeman

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.

U.S. House Unanimously Passes DeOndra Dixon INCLUDE Project Act – A Historic Victory for Down Syndrome Research

July 21st, 2026 by Tara Zeman

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

Denver Teen with Down Syndrome Stars in Award-Winning Film Debuting on Netflix During Father’s Day Weekend

June 11th, 2026 by Alex Lee

Color Book star Jeremiah Daniels will also appear before hundreds of the world’s leading Down syndrome scientists at an international conference co-organized by GLOBAL

Check out Color Book In the News:

The Denver Gazette | A Father-Son Story for Netflix … and Fathers Day

The New York Times | ‘Color Book’ Review: Love and Grieving

9NEWS | Local Actor with Down Syndrome Stars in Netflix Movie

CBS Colorado | Jeremiah Daniels Brings Energy & Attention to Down Syndrome

Colorado Public Radio | As ‘Color Book’ Premieres on Netflix, We Catch Up with the Aurora Boy Who Stars in the Movie and His Parents as They Look to the Future

KOSI 101.1, The Kathie J Show | Color Book Movie now streaming on Netflix

Disability Scoop | Netflix to Debut Movie Starring Actor With Down Syndrome 

As Father’s Day approaches, Denver-area teenager Jeremiah Daniels is about to have a remarkable week in the national and international spotlight.

Beginning June 19, the acclaimed feature film Color Book, winner of 30 film festival awards including the American Independent Award for Best U.S. Feature Film at the 2024 Denver Film Festival, will make its highly anticipated Netflix debut, introducing audiences around the world to Jeremiah’s moving performance as Mason, a young boy with Down syndrome at the center of the film’s powerful story.

During the same week, Jeremiah and his father will be featured guests at the 6th International Conference of the Trisomy 21 Research Society (T21RS) which brings together leading Down syndrome researchers, clinicians, industry leaders, families, patient organizations, and advocates from around the globe.

The timing creates a compelling real-life connection between the film’s message and the conference’s mission.

Color Book, written and directed by rising filmmaker David Fortune, tells the heartfelt story of a devoted single father navigating the challenges and joys of raising his son with Down syndrome following the death of his wife. The film, produced by Kiah Clingman, Kristen Uno and Autumn Bailey-Ford, has earned widespread praise for its authentic portrayal of disability and family, with Jeremiah’s performance as Mason serving as the emotional heart of the story.

As researchers and advocates from around the world gather in Denver to discuss advances that improve the quality of life for people with Down syndrome and their families, Jeremiah’s story offers a powerful reminder of the importance of authentic representation and inclusion both on screen and in everyday life.

The Father’s Day-week connection is especially meaningful, as both the film and the conference highlight the vital role families, and fathers in particular, play in supporting and empowering individuals with Down syndrome.

T21RS was co-founded by the Global Down Syndrome Foundation (GLOBAL) in 2014 and organizes a biennial conference that has been hosted in major cities such as Paris, Chicago, Barcelona, and Rome. This year’s conference will be held in Denver from June 17-20 at the Grand Hyatt Denver and is co-hosted by GLOBAL and the Crnic Institute for Down Syndrome.

Media interviews are available with Jeremiah Daniels and his father to discuss:
• Jeremiah’s journey from Denver-area student to star of a nationally streaming feature film
• The impact and importance of authentic representation of people with Down syndrome in film and media
• The upcoming Netflix release of Color Book on June 19
• Their participation in the GLOBAL co-organized international T21RS conference in Denver
• Family advocacy, inclusion, and opportunities for individuals with Down syndrome
• The powerful father-son themes at the center of both the film and Father’s Day week

Interview Opportunities Available:
Jeremiah Daniels and his father, Terrance Daniels
Color Book Writer/Director David Fortune
Color Book Producer Kiah Clingman
Michelle Sie Whitten, Co-Founder, President, CEO, Global Down Syndrome Foundation

About Color Book
Winner of 30 awards and another eight nominations across the film festival circuit, including the American Independent Award for Best U.S. Feature Film award at the 2024 Denver Film Festival, Color Book is a moving drama about a single father and his son with Down syndrome as they navigate grief, resilience, and connection. The film has been praised by critics and audiences alike for its sensitive, genuine portrayal of disability and family life. It premieres globally on Netflix on June 19.

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 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 Down Syndrome Foundation Celebrates Historic Bipartisan Advancement of the DeOndra Dixon INCLUDE Project Act

May 29th, 2026 by Alex Lee

House Energy & Commerce Committee Unanimously Advances Landmark Legislation as Congressional Leaders Honor DeOndra Dixon, John J. Sie, Michelle Sie Whitten, and GLOBAL’s Decades of Advocacy

  Watch the Full Committee Markup  

 

Program Highlights: 

– Opening Statements by Rep. DeGette + Chairman Guthrie [24:14-26:32]

– Opening Statement by Rep. Tonko [28:12-58]

– Full Floor Speeches [4:03:05-4:11:50]

– Floor Speech Rep. Hudson [4:03:05-4:05:29 – 4:06:37-54]

– Floor Speech Chairman Guthrie [4:05:29-4:06:37 – 4:06:54-4:07:07 – 4:09:46-56]

– Floor Speech Rep. DeGette [4:07:07-4:09:46]

– Floor Speech Rep. Tonko [4:09:56-4:11:50]

– Voting Process [4:11:50-4:15:49]

WASHINGTON, D.C. May 29, 2026 — Following a powerful and deeply moving bipartisan markup, the U.S. House Energy & Commerce Committee unanimously advanced the DeOndra Dixon NIH INCLUDE Project Act (H.R. 3491) by a vote of 46-0, sending the landmark legislation to the full House of Representatives.

The legislation, led by Representatives Diana DeGette (D-CO) and Richard Hudson (R-NC), would codify and strengthen the National Institutes of Health (NIH) INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE), the most successful Down syndrome research initiative in U.S. history.

 

For the Global Down Syndrome Foundation (GLOBAL), the markup represents much more than a legislative milestone. Throughout the hearing, Members of Congress from both parties celebrated the extraordinary progress already achieved through the NIH INCLUDE Project, recognized the tireless advocacy of GLOBAL and its President & CEO Michelle Sie Whitten, and paid heartfelt tribute to GLOBAL founder John J. Sie.

During the markup, Representative Diana DeGette recognized Whitten’s leadership and expressed her optimism about the bill, “Even in this fraught political environment, this is an issue that transcends party lines… The INCLUDE Project Act passed the House unanimously last Congress, and this must be the year it’s finally passed into law.”

Representative Paul Tonko (D-NY) echoed those sentiments, stating that the progress being achieved “doesn’t happen without sustained advocacy” and specifically recognizing the “tireless advocacy” of the Global Down Syndrome Foundation. He went on to reflect on the science that GLOBAL and its affiliate, the Linda Crnic Institute for Down Syndrome, has been leading, “Every one of these breakthroughs carries the hope for a brighter tomorrow for individuals living with Down syndrome.”

Representative Richard Hudson (R-NC), who co-leads the legislation with Representative DeGette, thanked Michelle Sie Whitten and GLOBAL “for the tremendous work” they have done to raise awareness, advocate for research, and support caregivers, adding, “They do an amazing job.” His message to people with Down syndrome was heartfelt, “We support you. We love you. We value you. And we are committed to funding the research that will ensure you have a long and healthy life.”

 

One of the most touching moments of the markup came when House Energy & Commerce Committee Chairman Brett Guthrie (R-KY) recognized the contributions of GLOBAL founder John J. Sie. Referring to Mr. Sie’s role in founding C-SPAN, Chairman Guthrie remarked, “Everybody gets to watch our committee proceedings because your father founded C-SPAN.”

Chairman Guthrie then noted that Mr. Sie, who recently celebrated his 90th birthday, was watching the markup live and waiting to see the legislation advance.

“Your father, who is now 90 years old, is watching C-SPAN now so he can watch us pass the bill,” said Chairman Guthrie. “Thanks for making Congress public to the country, and I’m glad he’s using this time to watch this moment.”

Chairman Guthrie also recognized the deeply personal significance of the legislation for the Sie family, noting that the bill honors John’s granddaughter and Michelle’s daughter, Sophia, whose happens to have Down syndrome and was the inspiration behind the establishment of GLOBAL, the Crnic institute and the Alzheimer’s & Cognition Center on the Anschutz Medical Campus, the Sie Center for Down Syndrome at Children’s Hospital Colorado, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

Mr. Sie’s lifelong commitment to public service, transparency, hard work, and opportunity has inspired generations of leaders and advocates. His vision helped transform how Americans engage with their government, and his family’s commitment to improving the lives of people with Down syndrome has helped transform the future of medical research and care.

The markup also highlighted the remarkable impact of the NIH INCLUDE Project. Since its launch, INCLUDE-supported research has accelerated 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.

Representative DeGette highlighted the dramatic progress already achieved through Down syndrome research, noting that life expectancy for individuals with Down syndrome has increased by approximately ten years during the period of expanded federal investment.

“What we’ve done is put science and inclusion in front of politics,” said Representative DeGette. “And it benefits everybody living with Down syndrome and their families.”

Representative Tonko emphasized that every breakthrough emerging from INCLUDE research “carries the hope for a brighter tomorrow for individuals living with Down syndrome.”

The legislation is named in honor of the life and legacy of GLOBAL Ambassador DeOndra Dixon, beloved sister of Academy Award-winning actor Jamie Foxx, whose joyful advocacy inspired people around the world and helped elevate awareness, inclusion, and opportunity for people with Down syndrome. A dancer, artist, advocate, and trailblazer, DeOndra dedicated her life to ensuring that people with Down syndrome were seen, valued, respected, and celebrated. Today, her legacy lives on through landmark legislation that will expand groundbreaking research, improve health outcomes, and create a brighter future for generations of people with Down syndrome and their families.

Michelle Sie Whitten, President & CEO of the Global Down Syndrome Foundation, said:

“We were profoundly humbled by the beautiful remarks shared during this markup and deeply grateful for the extraordinary bipartisan support shown by Chairman Guthrie, Representatives DeGette, Hudson, Tonko, and every member of the House Energy & Commerce Committee.

“To hear congressional leaders recognize my amazing immigrant father, my inspirational daughter, the work of our GLOBAL team and our affiliates, and the legacy of our beloved friend and Ambassador DeOndra Dixon was incredibly meaningful.

“The NIH INCLUDE Project has already transformed Down syndrome research and changed lives. The DeOndra Dixon INCLUDE Project Act will ensure that this progress continues for generations to come. Most importantly, this legislation sends a powerful message that people with Down syndrome matter, their health matters, and their futures matter.”

GLOBAL also expressed gratitude to Representatives Diana DeGette, Richard Hudson, Brett Guthrie, Paul Tonko, Tom Cole, Rosa DeLauro, Eleanor Holmes Norton, Pete Stauber, Cathy McMorris Rodgers, and the many bipartisan congressional champions who have supported the Down syndrome community and the NIH INCLUDE Project over the years.

According to Senate sponsors Senators John Hickenlooper (D-CO) and Jerry Moran (R-KS), movement on the legislation on the other side of the Capitol is not far behind, creating renewed optimism that the DeOndra Dixon INCLUDE Project Act will soon be signed into law.

 

The unanimous 46-0 committee vote marks one of the strongest bipartisan endorsements received by any health-related legislation this Congress and reflects a growing national commitment to improving health outcomes and quality of life for people with Down syndrome and their families.

 

To learn more about GLOBAL, visit www.globaldownsyndrome.org.

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.

Contact:

Alex Lee, alee@globaldownsyndrome.org | 720-548-5631

GLOBAL’s AcceptAbility Gala Raises $430,000 for Down Syndrome Research and Medical Care as Celebrities and Congressional Leaders Rally Behind the Cause

May 22nd, 2026 by Alex Lee

Global Down Syndrome Foundation Honored Sen. Shelley Moore Capito and Rep. Paul Tonko at Event that Featured Award-Winning Multiplatinum Artist Rachel Platten and Inclusive Dance Team

Washington, DC, May 21, 2026 – Last night, the Global Down Syndrome Foundation (GLOBAL) held its eighth annual AcceptAbility Gala, Washington DC’s largest fundraiser for people with Down syndrome, raising $430,000 to support important research and medical care benefiting people with Down syndrome. Senator Shelley Moore Capito (R-WV) and Representative Paul Tonko (D-NY) received GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award, and pledged their continued strong advocacy in Congress to improve the lives of people with Down syndrome.

“Last night’s AcceptAbility Gala shows the world the incredible power of bipartisan unity at an evening of unconditional love,” says GLOBAL President & CEO Michelle Sie Whitten. “GLOBAL is proud to be leading a historic era of Down syndrome research and medical breakthroughs that has already contributed to an extra ten years of life expectancy. Bringing together our congressional and NIH champions, inspirational self-advocates, families, scientists, clinicians, celebrities and supporters all under one roof is absolutely amazing. Watching the world rally around our mission to elongate life and dramatically improve health outcomes for our loved ones is truly remarkable and deeply rewarding.”

“I am so grateful to the Global Down Syndrome Foundation for being recognized with the prestigious Quincy Jones Exceptional Advocacy award at the AcceptAbility Gala,” says Senator Shelley Moore Capito (R-WV). “Spending time with advocates, families, and researchers tonight was a joy and inspiration. I am proud to stand with GLOBAL as we continue to make important investments in the trans-NIH Down syndrome research program, the INCLUDE Project, that is already helping individuals with Down syndrome live healthier, fuller lives.”

“It was such an honor to receive the Quincy Jones Exceptional Advocacy Award at the inspirational AcceptAbility Gala last night,” says Representative Paul Tonko (D-NY). “The self-advocates and families were such an inspiration, and a reminder of why our fight is so important. I am proud of my partnership with the Global Down Syndrome Foundation which is vital to passing the bipartisan DeOndra Dixon INCLUDE Project Act and securing NIH funding specific to Down syndrome in terms of Alzheimer’s and other diseases which impact this community disproportionately. This legislation will deliver the medical breakthroughs and treatments that these families urgently deserve.”

“My thanks to the Global Down Syndrome Foundation for welcoming me and many of my NIH colleagues to this year’s AcceptAbility Gala, a special occasion honoring inspiring self-advocates, families, congressional leaders, and supporters,” says Jay Bhattacharya, M.D., Ph.D., Director of the National Institutes of Health. “NIH remains committed to advancing groundbreaking Down syndrome research and applauds the leadership of GLOBAL, the Crnic Institute, and the broader Down syndrome community for their collaboration through the NIH INCLUDE Project. Together, we are building on the success of this important initiative to advance discoveries that may lead to new treatments for Alzheimer’s disease, cancer, autoimmune disorders, and many other chronic diseases.”

Celebrities passionate about the cause included Emmy Award-winning multi-platinum artist, singer, and songwriter Rachel Platten; award-winning Grey’s Anatomy actress Caterina Scorsone; author, actor, and public speaker Frank Stephens; author and public speaker David Egan; Emmy Award-winning news anchor and podcast host Autria Godfrey; and award-winning journalists Kyra Phillips and John Roberts who emceed the gala.

Held at the JW Marriott Washington, DC, the event was attended by past GLOBAL awardees Senator John Hickenlooper (D-CO), Representatives Richard Hudson (R-NC), Diana DeGette (D-CO), and Pete Stauber (R-MN); Representatives Brett Guthrie (R-KY), Young Kim (R-CA), Jason Crow (D-CO), Gabe Evans (R-CO), Barry Moore (R-AL), and many bipartisan Congressional supporters of the Down syndrome community.

Crystal Muro brought the ballroom to its feet as GLOBAL honored the beloved Ambassador and lifelong self-advocate from Orange County, California, for her transformative leadership and unwavering commitment to inclusion for people with Down syndrome. Celebrating her 40th birthday this year, Crystal inspired attendees with her joyful spirit, passionate advocacy, and dedication to creating greater opportunities for the Down syndrome community.

Representative DeGette, a senior member of the House Energy & Commerce committee, made a major announcement at the gala that the committee is voting today on the GLOBAL led DeOndra Dixon INCLUDE Project Act, to authorize the currently funded trans-NIH initiative. The audience reacted with a standing ovation and applauded the work of DeGette and the bill’s original cosponsor Representative Richard Hudson along with Representative Paul Tonko. Several gala speakers praised House E&C Chair Brett Guthrie (R-KY) who attended the gala for his commitment to advancing the legislation. The DeOndra Dixon INCLUDE Project Act is a legacy bill in memory of GLOBAL Ambassador DeOndra Dixon who is Academy and Grammy Award-winning Jamie Foxx’s younger sister. Jamie Foxx is one of GLOBAL’s international spokespeople. It is also a testament to the dedication of the now-retired Representative Cathy McMorris Rodgers (R-WA).

To recognize the transformative leadership of two key Congressional Champions, the Rosa DeLauro GLOBAL Advancement Award with a post-secondary scholarship was provided to Funmi Agbebi from Upper Marlboro, MD and the Tom Cole GLOBAL Advancement Award was provided to Monica Evans from Clarksville, MD. Caitlin Peruccio, Legislative Counsel and Senior Policy Advisor to Representative Rosa DeLauro, and Sofia Deiro, Legislative Director to Congressman Tom Cole, were on-hand to personally present the Advancement Awards.

With the help of GLOBAL Ambassador Crystal Muro and her family, Gala Board Chair Erin Book Mullen, Event Chair Tracy Watkins, and our amazing Sponsors, the inspirational gala attracted 380 attendees and raised $430,000 for GLOBAL’s life-saving research and medical care. GLOBAL supports over 200 researchers on the Anschutz MedicalCampus at the Crnic Institute for Down Syndrome and at the Alzheimer’s and Cognition Center, as well as 2,700 patients from 40 states and 11 countries at the Sie Center for Down Syndrome. For nearly two decades, Down syndrome was one of the least federally funded genetic conditions in the United States. Drs. Joaquin Espinosa and Nicole Baumer, Directors of the Crnic Institute and Sie Center respectively, were both in attendance.

At the end of the evening, Rachel Platten wowed the audience not only with her beautiful voice but by connecting with fans and bringing self-advocates with Down syndrome on stage while performing an intimate, heartfelt performance of some of her biggest hits including Fight Song, Better Place and Stand by You, and solo dancer Robert Wallop and inclusive dance team RhythmXpress delighted attendees with dance performances set to Risk It All – I Just Might Mix by Bruno Mars and Stand by You by Rachel Platten.  

Additional notables in attendance included GLOBAL Ambassadors CC Mullen, Charlotte (Charley) Fonfara-LaRose, Tucker Emry, and Abby Ashbrook; Directors from the NIH Drs. Jay Bhattacharya, Richard Hodes, Nicole Kleinstreuer, David Goff, Rohan Hazra, Jennifer Webster-Cyriaque, Monica Webb Hooper, Jennifer Plank-Bazinet, Anna Mazzucco, and Marishka Brown. Arc of the US CEO Katy Neas, Heather Sachs from the National Down Syndrome Congress, and executives from National Down Syndrome Society, North Carolina Down Syndrome Alliance, Down Country serving MO, IL & IA, Down Syndrome Association of Greater New Orleans, Down Syndrome Association of Delaware, Virginia Down Syndrome Association, and Down Syndrome South Africa.

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, pr@globaldownsyndrome.org, D: (720) 548-5631

New Research Published in Hotel Business: Inclusive Hiring May be Hospitality’s Retention Cure

April 30th, 2026 by Alex Lee

First-In-Kind National Survey Commissioned by Global Down Syndrome Foundation Reveals Barriers & Benefits to Tapping into the Disability Workforce

  Hotel Business Publication   Research White Paper  

 

DENVER – April 30, 2026 – A groundbreaking new research report published in Hotel Business reveals that hiring people with Intellectual and Developmental Disabilities (IDD) could considerably mitigate the hospitality industry’s staggering 70-80% turnover.

Commissioned by the Global Down Syndrome Foundation (GLOBAL) with support from the Daniels Fund, the multi-modal research includes a first-in-kind national survey of over 600 hospitality professionals featuring extensive interviews with senior executives, and a 20-week hospitality pilot training program for participants with Down syndrome at three Denver-area hotels: The Jacquard, Hotel Clio and The Clayton.

The national survey, conducted by SIS International Research in conjunction with GLOBAL, identifies a significant “Inclusion Paradox.” While hotel staff at every level acknowledge the reliability and positive impact of employees with IDD against a backdrop of a turnover crisis, actual hiring of people with IDD remains stagnant.

The report, First National Hospitality Industry Survey: The time to hire an IDD workforce is now, highlights that the industry is currently stuck in a “turnover survival mode loop.” This cycle forces managers to focus on short-term staffing needs rather than investing in the stable, long-term workforce that individuals with IDD could provide.

Drawing upon the new research and other evidence-based and anecdotal research on the IDD and hotel workforce, the report provides an action plan consisting of four pillars of support: (1) Training Systems, (2) Leadership Mandates, (3) Awareness and (4) Evidence-Based Frameworks.

“The data is clear: the hospitality industry is facing a chronic labor shortage that traditional hiring isn’t solving,” says Michelle Sie Whitten, President & CEO at the Global Down Syndrome Foundation. “Our research shows that while the desire to hire inclusively is there, managers are stifled by a lack of top-down mandates and specialized training that could be provided by disability and workforce advocacy organizations. At the end of the day, we aren’t just making a social case for hiring people with Down syndrome and IDD; we are making a definitive business case for a more resilient and stable workforce.”

“The data is clear: the hospitality industry is facing a chronic labor shortage that traditional hiring isn’t solving.” – Michelle Sie Whitten

Key findings from the survey of 633 hospitality professionals include:

  • Inclusion Paradox: While 83% of hotel managers believe individuals with IDD can succeed in their properties, 56% are not participating or have never actively participated in inclusion initiatives due to a lack of formal policy and a persistent “survival mode” mentality caused by industry-wide labor shortages.
  • The Directive Barrier: Most managers felt the biggest barrier to employing individuals with IDD is the lack of specific corporate guidelines or “top-down” permission to do so.
  • Confidence Paradox: 95% of hotel staff surveyed feel confident in their ability to lead employees with IDD, yet hiring lags due to lack of an executive mandate and perceived safety concerns and training demands.
  • The Stability Factor: Hospitality staff believe in the evidence-based research indicating that employees with IDD are shown to have longer tenures and higher motivation.
  • IDD Workforce Gap: Other credible and evidence-based research shows that 42% of the IDD community want a job but are currently unemployed.
  • DEI: The hospitality industry emphasizes diversity, equity and inclusion (DEI) in its hiring, but successful inclusion requires moving beyond DEI rhetoric toward leadership mandates and evidence-based training frameworks.
  • Financial Challenges & Benefits: Despite the annual 70-80% hotel industry churn rate and the estimated $5,800-per-employee turnover costs, most hotel professionals are unaware of the potential $2,400+ Work Opportunity Tax Credit or other federal incentives associated with hiring employees with IDD.

The research was made possible by the Daniels Fund, which has long prioritized disabilities as a core funding area. “At the Daniels Fund, we believe every person deserves the opportunity to reach their full potential” says Hanna Skandera, Daniels Fund President and CEO. “Meaningful employment is a critical pathway to earned success and independence. Inspired by Bill Daniels’ commitment to ensuring people with developmental disabilities are never overlooked, we are proud to support GLOBAL’s research, which will help turn awareness into real career opportunities.”

As detailed in Hotel Business, the intensive 20-week GLOBAL Hospitality Pilot Training Program following nine participants with Down syndrome reinforced that successful hiring of an IDD workforce requires a scaffolding methodology, matching tasks to individual strengths, mandating inclusion from the executive level, and leveraging external partnerships for training and support. The program utilized modified instructional materials and dual-focus training for both the hotel professionals and the participants with IDD.

Created with input from a committee of renowned academicians and IDD employment specialists, the program implemented an evidence-based, structured and tiered onboarding model: (1) Off-site training, (2) On-site observation, and (3) On-site practice and implementation. At the end of the program 92% of hotel trainers reported they would recommend hiring a person with Down syndrome.

During the program participants at The Jacquard took on roles at the hotel’s signature restaurant, Narrative, and assisted with front-of-house baggage storage. “Being inclusive is incredibly important, not just for our guests who see themselves reflected in our workforce, but for our staff who gain a broader perspective on teamwork,” says Ashley Dimond, principal at Copford Capital Management, owner of The Jacquard hotel. “We need to think about IDD with the same intentionality we bring to other areas of diversity. It was a great opportunity to participate in this GLOBAL program and to have our interns show that they can thrive in high-touch, guest-facing environments.”

“We need to think about IDD with the same intentionality we bring to other areas of diversity.” – Ashley Dimond

“The GLOBAL trainees with Down syndrome did a truly great job,” says Moana Leger, Human Resources Director at Hotel Clio, who organized trainings in the areas of laundry and housekeeping. “They were reliable, eager to learn, and capable. Seeing their progress over the 20 weeks was inspiring for our entire team. We look forward to being able to apply what we have learned to hiring people with IDD in the not-too-distant future.”

The human impact of the program was evident from surveys and feedback from training program participants. “I look forward to a time where I am able to work and make money,” says Chase Perry, a participant in the GLOBAL Hospitality Pilot Training Program. “The hospitality program prepared me, made me feel included and excited about working!”

“The hospitality program prepared me, made me feel included and excited about working!” – Chase Perry

“This research is a unique milestone because, for the first time, we have looked beyond general disability categories to focus specifically on the nuances of intellectual and developmental disabilities in the hospitality workforce,” says Ruth Stanat, CEO of SIS International Research. “By specifying IDD, we have uncovered the specific operational and psychological barriers—and opportunities—that define this untapped labor market.”

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.

About the Daniels Fund
Established by cable television pioneer Bill Daniels, the Daniels Fund is a private charitable foundation dedicated to improving American life through its grants, scholarship, and ethics programs with particular focus on Colorado, New Mexico, Utah and Wyoming. Throughout its history, the Fund has given more than $1.5 billion, including grants to nearly 6,000 nonprofit partners and higher education scholarships to over 5,600 students. Visit DanielsFund.org to learn more.

About the Participating Hotels

The Jacquard, Autograph Collection

Located in the heart of Denver’s iconic Cherry Creek North, The Jacquard is an Autograph Collection hotel that blends sophisticated style with personalized service. Known for its signature restaurant, Narrative, and its vibrant rooftop, the hotel is a centerpiece of Denver’s luxury hospitality scene.

Hotel Clio, a Luxury Collection Hotel, Denver Cherry Creek

Hotel Clio invites guests to experience a sophisticated yet welcoming retreat in the heart of Cherry Creek North, where elevated design meets thoughtfully curated local experiences. As part of Marriott’s Luxury Collection, the hotel offers a truly inspired and authentic connection to the Rocky Mountain region—blending luxury, comfort, and a sense of place in every stay.

Clayton Members Club & Hotel

The Clayton is a boutique hotel and social club built on the foundation of inclusivity and community, where every individual is valued for their unique contribution. Located in Cherry Creek, the property offers 63 guest rooms alongside a membership experience designed to foster connection and cultivate impact.

About the Research Partner

SIS International Research

SIS International is a leading global market research and strategic consulting firm with over 40 years of experience. Providing comprehensive research solutions across 120 countries, SIS specializes in helping organizations and foundations uncover deep insights to solve complex industry challenges.

 

Media Contact:

Alex Lee, alee@globaldownsyndrome.org, pr@globaldownsyndrome.org, D: (720) 548-5631

Global Down Syndrome Foundation Provides $16,000 in Employment Awards

April 27th, 2026 by MaryKate Vandemark

Global Down Syndrome Foundation expanding inclusive workforce opportunities worldwide!

Denver – April 2026 – The Global Down Syndrome Foundation (GLOBAL) is proud to announce the 2026 recipients of its highly respected GLOBAL Employment Awards. This year, GLOBAL awarded $16,000 in Employment Awards to nine outstanding Down syndrome organizations in the U.S. and internationally, funding innovative programs that create and expand meaningful employment opportunities for people with Down syndrome.

The GLOBAL Employment Awards are a distinguished benefit for GLOBAL member organizations. Each year, the awards foster collaboration and fund local programs that make a direct and lasting impact by creating or expanding employment pathways for self-advocates. This year’s Employment Awards provide life-changing programs empowering self-advocates, strengthening communities, and demonstrating the tremendous value people with Down syndrome bring to the workforce.

The 2026 awards will support nine dynamic programs that together will impact thousands of individuals and families. Funded initiatives include job coaching, vocational training, expanded hours for self-advocate employees, public-facing ambassador roles, and new opportunities that promote independence, confidence, and community inclusion.

“Opportunities for adults with Down syndrome in South Africa remain limited, which is why we must actively create them,” says Elaine Passmoor, National Executive Director of Down Syndrome South Africa. “With the support of the Global Down Syndrome Foundation, we are leading by example by opening doors to meaningful, paid work where adults with Down syndrome are recognized, valued, and respected.”

At GLOBAL, we are dedicated to improving the lives of individuals with Down syndrome by advancing inclusion, independence, and self-advocacy. Since launching the GLOBAL Employment Awards and GLOBAL Education Awards, GLOBAL has issued hundreds of grants supporting education and employment initiatives, investing more than $1.2 million in Down syndrome member organizations across many states and countries.

Please join us in congratulating the 2026 GLOBAL Employment Award recipients and celebrating the important work they are doing to advance employment for people with Down syndrome.

2026 GLOBAL Employment Award Recipients (in alphabetical order)

Down Syndrome Association for Families, Lincoln, NE:
Community Outreach Specialist
The role of the Community Outreach Specialist is to promote community engagement and outreach initiatives through their self-advocate employee interacting with community leaders and business owners to promote partnerships and attend events.

Down Syndrome Association of Central Kentucky, Lexington, KY:
DSACK Administrative Assistant
The administrative assistant position completes weekly tasks, reports to the Office Coordinator, and participates in outreach events with the Director of Medical and Community Outreach.

Down Syndrome Association of Central New Jersey, Ewing, NJ:
Self-Advocate Training
The Self-Advocate Training Program is designed to equip young adults with Down syndrome with essential life skills, promote awareness in the community, and foster inclusion.

Down Syndrome Association of Greater Charlotte, Charlotte, NC:
Community Ambassador
The Community Ambassador will engage in outreach, peer support, and public education, including welcoming new families, assisting at programs and events, sharing their story to promote understanding, and representing the organization at community and partner activities.

Down Syndrome Association of Middle Tennessee, Hermitage, TN:
Job Coach
This program will support self-advocates with Down syndrome at our organization by providing individualized, on-the-job coaching that promotes independence, skill development, and long-term employment success.

Down Syndrome Association of Northeast Ohio, Independence, OH:
“Sunburst Snacks” Employment, Inclusion, and Community Connection
Sunburst Enterprises, DSANEO’s adult employment initiative to prepare, connect, and employ adults with Down syndrome across Northeast Ohio is a paid training program, that will provide participants (“Team Members”) the opportunity to acquire transferable job skills.

Down Syndrome of Louisville, Louisville. KY:
Supporting the continued employment of DSL self-advocate staff
The Office Assistant, a self-advocate with Down syndrome, provides meaningful, paid employment while fostering independence, professional skill development, and social inclusion. This role also serves as a visible demonstration of the capabilities of individuals with Down syndrome in professional environments, helping shift community perceptions and encouraging other employers to pursue inclusive employment models.

Down Syndrome South Africa, Centurion, South Africa:
Voices Matter: National Self-Advocates in Action Programme
This program will create structured, part-time paid opportunities for self-advocates to play an active leadership role within DSSA by sharing their lived experiences, guiding organizational decision-making, shaping themes for national awareness days, and developing videos and messages used in public awareness campaigns.

Mi Work Matters, Livonia, MI:
Mi Work Matters Workplace Readiness Training and Employment Pilot
This program supports an individual with Down syndrome to work as a paid Team Member at Mi Work Matters second social enterprise – The Good and Strong Coffee Shop & Cafe.

       

 

 

 

 

 

                                           

To learn more about GLOBAL membership awards, visit:
https://www.globaldownsyndrome.org/global-awards/

To learn more about GLOBAL memberships, visit:
https://www.globaldownsyndrome.org/global-membership/

To learn more about the Global Down Syndrome Foundation, visit:
https://www.globaldownsyndrome.org/

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest nonprofit in the U.S. dedicated to saving lives and dramatically improving health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting 400+ scientists and over 2,700 patients from 33 states and 10 countries.

Working closely with Congress and the National Institutes of Health, GLOBAL is the leading advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 125 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  ™. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.
Visit globaldownsyndrome.org and follow us on Facebook, X, Instagram, and LinkedIn.

GLOBAL Marks World Down Syndrome Day with Publication of Milestone Review of New Medical Guideline

March 20th, 2026 by bryng

For Immediate Release:  Alex Lee, alee@globaldownsyndrome.org, D: (720) 548-5631

 The Agency for Healthcare Research and Quality Systemic Review Publication Paves the Way for the GLOBAL Medical Care Guidelines for Adults with Down Syndrome 2nd Edition

DENVER, CO – March 20, 2026 – The Global Down Syndrome Foundation (GLOBAL) is proud to announce that the Agency for Healthcare Research and Quality (AHRQ) systemic review of the new edition of the GLOBAL Medical Care Guidelines for Adults with Down Syndrome (GLOBAL Adult Guideline) has been published today in the prestigious Effective Health Care (EHC) Database.

This is an important milestone in the 5-to-7-year rigorous development process required to publish professional, evidence-based medical guidelines. The ECH publication includes updated findings on prevalence and treatment for common co-occurring conditions  and paves the way for the Second Edition of the GLOBAL Adult Guideline, which should be finalized by the end of 2026 or early 2027. The new edition updates and expands the first edition, which was published in JAMA in 2020 and established the first evidence-based standards for the adult Down syndrome community. The JAMA publication was one of the most visited medical recommendation pages on the JAMA website and to date has been professionally referenced over 200 times.

“To be able to announce this in time for World Down Syndrome Day is particularly meaningful, said GLOBAL Vice President of Research and Medical Care Bryn Gelaro. “This publication, led by PICORI and AHRQ, is a powerful validation of the rigor we bring to Down syndrome research and medical care. By vetting clinical expertise against hard evidence, we are finally providing a reliable resource for medical professionals to ensure adults with Down syndrome receive the specialized, high-quality care they deserve.” 

In 2023, GLOBAL was awarded a competitive grant from the Patient-Centered Outcomes Research Institute (PCORI). This grant funded a milestone systematic review designed to answer the GLOBAL Adult Guideline authors’ critical health questions and synthesize clinical expertise and research evidence. To ensure the highest level of objectivity, the AHRQ—the federal agency tasked with improving the safety and quality of America’s healthcare system—was commissioned to lead the comprehensive review of the literature.

The quality of the AHRQ review manuscript earned immediate publication in the EHC Database. In addition, the publication was acknowledged as a vital contribution to national health standards by the Director of AHRQ at the U.S. Department of Health and Human Services (HHS), Roger D. Klein, MD, JD.

“The GLOBAL Adult Guideline is important to my life,” says 2026 GLOBAL Ambassador Letizia Napoleone. “When I go to the doctor, I want to get better! They need to know about Down syndrome. I am proud to be part of GLOBAL who is helping doctors understand how to support people with Down syndrome to have healthy long lives.”

“We are deeply grateful to donors – including Key Collaborators and GLOBAL Member Organizations who understand the importance of this resource and have committed funds in support updates and the addition of important new medical cares,” says GLOBAL President & CEO Michelle Sie Whitten. It is also a testament to Bryn Gelaro and David Tolleson who have worked so diligently to ensure that the Guideline Workgroup can continue the complex task of rigorous review, excellent writing, and publication. As a mom to Sophia, it is wonderful to know that she will get infinitely better care in her old age because of this resource.”

The AHRQ systematic review will directly inform the 2nd Edition GLOBAL Adult Guidelines. While the first edition addressed nine critical areas— Behavior, Alzheimer’s/Dementia, Diabetes, Cardiovascular disease, Obesity, Osteoporosis, Atlantoaxial Instability, Thyroid Disease, and Celiac Disease, and Thyroid Disorders—the new edition will build on that foundation to include five additional topics:

  • Blood Cancers
  • Solid Tumor (Cancers)
  • Sleep Apnea
  • Eye and Vision
  • Musculoskeletal

“I remember wishing that this resource was available to my parents and brother, Jack, after David Tolleson introduced me to GLOBAL and the adult guidelines,” says Shawna Lucas, long-time GLOBAL supporter and former marketing executive. “Seeing this work recognized at the federal level gives us hope that every family will have access to the lifesaving information they need as their loved ones with Down syndrome age. This is a great way to honor Jack and to pay it forward to millions of adults with Down syndrome who deserve to grow old with a shot at good health and dignity.”

“Our family is honored to support the GLOBAL Medical Care Guidelines for Adults with Down Syndrome,” says Michele Ritter, a long-time GLOBAL supporter. “Having lost my beautiful sister Lorraine to Alzheimer’s, we know firsthand the gaps in medical care for adults with Down syndrome. We are proud and excited to support the 2nd edition and to see the impact these guidelines will have on the health and longevity of our loved ones around the world.”

Fifty-four GLOBAL Member Organizations have supported the 2nd Edition GLOBAL Adult Guideline. One of the largest multi-year donors, the Down Syndrome Alliance of the Midlands (DSA), based in Omaha, Nebraska, is grateful for GLOBAL’s efforts to establish this first-in-kind resource.

“For our families in the Midlands, these guidelines are more than just research—they are a lifeline,” said DSA Executive Director Elizabeth Draney. “It is great to have federal support but equally important, the GLOBAL Adult Guideline is something that doctors in our community trust and can help ensure our adult with Down syndrome receive the best care possible. We pledged our support for the second edition because investing in the guideline is an investment in the health of every person with Down syndrome.”

In 2018 GLOBAL successfully lobbied and advocated for the first trans-National Institutes of Health Down syndrome funding program called the INCLUDE Project. In the time since the first edition of the GLOBAL Adult Guideline was published, the NIH INCLUDE Project has provided over $440M of funding to Down syndrome research that is contributing to the evidence that is the very foundation of the guidelines. In addition, the INCLUDE Project research is bolstering the evidence that contributes to the GLOBAL Adult Guideline evidenced by the 2nd Edition having 300% more quality publications to draw from.

List of GLOBAL Adult Guideline Authors: Medical Director at University of Pittsburgh Adult Down Syndrome Center, Peter Bulova (MD), Medical Director of the Down Syndrome Clinic and Research Center at Kennedy Kreiger, George Capone (MD), Medical Director and Co-Founder, Advocate Medical Group Adult Down Syndrome Center in Chicago, Brian Chicoine (MD), Executive Director of the Linda Crnic Institute for Down Syndrome at University of Colorado Anschutz Medical Campus, Aurora, CO Joaquín Espinosa(PhD), Medical Director of Immunogenetics and Transplantation Laboratory at the University of Arkansas for Medical Sciences, Terry Harville (MD), Surgical Director of the Complex Obstructive Sleep Apnea Center at the University of Cincinnati, Christine Heubi (MD), Assistant Professor in the Department of Physical Therapy at the University of Nevada, Thessa Hilgenkamp (PhD), Professor of Ophthalmology at the University of Pittsburgh School of Medicine, Vishal Jhanji (MD), Medical Director, Adult Down Syndrome Clinic at Denver Health, Barry Martin, MD, Chief of Pediatric Ophthalmology at Children’s Hospital Colorado, Emily McCourt (MD), Director of the Down Syndrome Behavioral Health Collaborative, University of Colorado School of Medicine Lina Patel (PsyD), Co-founder of the Adults with Down Syndrome Specialty Clinic at the University of Kansas Medical Center, Moya Peterson (PhD, ARNP), Director of Medical Student Education, University of Colorado Anschutz Medical Campus, Michael Puente Jr (MD), Medical Director of the Alzheimer’s Therapeutic Research Institute and Alzheimer’s Clinical Trials Consortium – Down Syndrome Principal Investigator at Keck School of Medicine of University of Southern California, Michael Rafii (MD, PhD), Professor of Family and Community Medicine at Cleveland Clinic Lerner College of Medicine and Case Western Reserve University School of Medicine Carl Tyler (MD), and Provider at the Down Syndrome Center of Western PA and Medical Director of Street Medicine Pitt at the University of Pittsburgh Medical Center, Anna Marie White (MD).

To learn more about the GLOBAL Medical Care Guidelines for Adults with Down Syndrome visit https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/.

For World Down Syndrome Day or GLOBAL Adult Guideline media inquiries, photos, and B-roll please contact Alex Lee at pr@globaldownsyndrome.org.

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About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL 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.