Archive for the ‘Press Releases’ Category

Christian Slater Joins Spectacular Celebrity Lineup for GLOBAL’s 19th Annual Be Beautiful Be Yourself Fashion Show

October 7th, 2026 by Tara Zeman

Golden Globe-winning actor and acclaimed producer joins Geena Davis, Maria Menounos, Kennedy Garcia and a star-studded lineup for the largest Down syndrome fundraiser in the world

Golden Globe-winning actor and producer Christian Slater has joined an extraordinary lineup of celebrities and advocates supporting the Global Down Syndrome Foundation (GLOBAL) at the 19th annual Be Beautiful Be Yourself Fashion Show on Saturday, November 7, 2026, in Denver.

WHAT

The Be Beautiful Be Yourself Fashion Show is the largest annual Down syndrome fundraiser in the world, bringing together more than 1,400 guests for an unforgettable evening celebrating people with Down syndrome. The event features celebrity supporters, inspiring models with Down syndrome, a cocktail reception, dinner, live and silent auctions, and a spectacular runway finale.

Proceeds support GLOBAL’s transformative work in research, medical care, education and advocacy, including more than 400 scientists

 conducting breakthrough research and medical professionals caring for more than 2,700 patients with Down syndrome from across the United States and around the world.

Each year, the event celebrates a GLOBAL Ambassador, two Quincy Jones Exceptional Advocacy Awardees, and the Event Co-Chairs. The evening culminates with models with Down syndrome taking center stage on the runway alongside celebrity supporters.

WHEN & WHERE

Saturday, November 7, 2026

5:00 PM – Cocktail Reception / Silent Auction
6:30 PM – Dinner / Live Auction / Fashion Show

Sheraton Denver Downtown Hotel
1550 Court Place
Denver, CO 80202

WHO

  • Christian Slater – Golden Globe-winning actor, producer and acclaimed stage performer known for iconic roles in Heathers, True Romance, Mr. Robot, Dr. Death and Dexter: Original Sin. Slater has built a celebrated career across film, television and the stage, including Broadway and the West End, and most recently joined the cast of Shrinking Season 4.
  • Geena Davis – Academy Award-winning actor, author, producer and disability inclusion advocate. Davis founded the Geena Davis Institute in 2004, which works to improve representation and authentic storytelling in entertainment.
  • Maria Menounos – Emmy Award-winning journalist, television personality, actor, New York Times best-selling author and digital entrepreneur; 2026 Quincy Jones Exceptional Advocacy Awardee.
  • Kennedy Garcia – Award-winning actor, model, public speaker and disability advocate who made history as the first person with Down syndrome to have a recurring role on American daytime television; 2026 Quincy Jones Exceptional Advocacy Awardee.
  • Letizia Napoleone – 2026 GLOBAL Ambassador
  • John C. McGinley – Award-winning actor and advocate, Scrubs and Rooster
  • Caterina Scorsone – Award-winning actor, Grey’s Anatomy
  • Elana Meyers Taylor – Six-time Olympic medalist and advocate
  • Terrell Davis – Pro Football Hall of Famer and Super Bowl XXXII MVP
  • Jason George – Award-nominated actor, Grey’s Anatomy
  • Alexis Floyd – Actor, Grey’s Anatomy and Inventing Anna
  • Niko Terho – Actor, Grey’s Anatomy
  • Anthony Hill – Actor, Grey’s Anatomy
  • Beverley Mitchell – Actor, 7th Heaven
  • Max Carver – Actor, Teen Wolf and Desperate Housewives
  • Shelley Hennig – Actor, Teen Wolf
  • Amanda Booth – Model, actor and advocate
  • Naomi and Renee – Denver Broncos Cheerleaders
  • Kim Christiansen – 9NEWS Anchor and returning co-emcee
  • Phil Lipof – 9NEWS Anchor and returning co-emcee
  • Edit & Tamas Viski-Hanka – Event Co-Chairs
  • Alexandra & Sean Swierczewski – Event Co-Chairs
  • Michelle Sie Whitten – President & CEO, Global Down Syndrome Foundation

WHY

Down syndrome is the most common chromosomal condition and historically one of the least-funded genetic conditions by the federal government. GLOBAL is the largest U.S. nonprofit working to significantly improve health outcomes and elongate the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy.

GLOBAL’s advocacy has helped drive a dramatic increase in federal Down syndrome research funding, from $18 million in 2009 to more than $140 million today. In 2018, GLOBAL’s bipartisan advocacy helped establish the NIH INCLUDE Project, launching a new era of Down syndrome research. More than $523 million has been invested in INCLUDE-related research over the past eight years.

GLOBAL is now leading bipartisan efforts around the DeOndra Dixon INCLUDE Project Act, named in honor of beloved GLOBAL Ambassador DeOndra Dixon. The legislation would formally authorize the NIH INCLUDE Project and ensure continued federal investment in Down syndrome research.

The Be Beautiful Be Yourself Fashion Show is a major driver of this work, supporting research at the Linda Crnic Institute for Down Syndrome and the CU Alzheimer’s & Cognition Center, as well as comprehensive medical care at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado and the GLOBAL Adult Clinic at Denver Health.

HOW TO SUPPORT

Tickets and Table Sponsorships are available online. Supporters can also Sponsor a Model or Donate to support GLOBAL’s life-changing research and medical care.

To cover the event or receive photos, videos, or additional information, contact:

Trisha Davis – trishdavis0707@gmail.com | 818-640-9259
Alex Lee – alee@globaldownsyndrome.org | 720-548-5631

For more information, visit www.bebeautifulbeyourself.org and www.globaldownsyndrome.org.

 

Geena Davis, Maria Menounos and Kennedy Garcia Lead Star-Studded 2026 Be Beautiful Be Yourself Fashion Show

September 29th, 2026 by Alex Semancik

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

GLOBAL Honors David Tolleson’s 25 Years of Service by Establishing Emergency Relief Award Program in His Name

September 24th, 2026 by Alex Semancik

New Fund Will Provide Emergency Grants to People with Down Syndrome and Their Families, With Donations Matched up to $50,000 Through December 2026

Please specify you are donating to David Tolleson’s Emergency Relief Award Program when making a donation

DENVER, CO, September 24, 2026 — The Global Down Syndrome Foundation (GLOBAL) today announced that Vice President of Strategic Alliances David Tolleson will retire from his full-time role after dedicating 25 years of his career to serving people with Down syndrome, their families and the organizations that support them.

To honor Tolleson’s extraordinary service and ensure that his commitment to helping families continues for years to come, GLOBAL is establishing the David Tolleson GLOBAL Emergency Relief Awards program. The program will initially provide multiple emergency grants of approximately $1,000 each year to people with Down syndrome and their families facing urgent and extraordinary needs.

GLOBAL has established an initial fundraising goal of $250,000 for the program. As fundraising grows, GLOBAL hopes to expand both the number and size of the awards. To help launch the effort, a generous anonymous donor has agreed to match every contribution dollar for dollar, up to $50,000, through December 31, 2026.

“It is incredibly meaningful—and so completely David—that the legacy he wants to leave is one that helps people in our community during their most difficult moments,” says Michelle Sie Whitten, GLOBAL Co-Founder, President and CEO. “David was my mentor for many years, and it was a tremendous honor to recruit him to establish and lead GLOBAL’s Strategic Alliances department. At NDSC, he created a warm, welcoming and collaborative culture where a thousand flowers could bloom. He brought that same generosity of spirit to GLOBAL, strengthening our relationships, supporting our member organizations and reminding all of us that our community is strongest when we work together.”

Before joining GLOBAL in 2021, Tolleson served for 19 years as Executive Director of the National Down Syndrome Congress (NDSC). Under his leadership, NDSC expanded its national advocacy, education and family-support efforts and strengthened its Annual Convention, the nation’s largest gatherings of people with Down syndrome, their families and the professionals who support them.

At GLOBAL, Tolleson created and led the Strategic Alliances department, overseeing the Foundation’s growing Membership Program, membership benefits such as the GLOBAL Education and Employment Awards, quarterly GLOBAL Webinars, and numerous advocacy and resource collaborations. Through his outreach, leadership and personal relationships, he helped GLOBAL expand its network of member organizations and fostered a culture in which local organizations could learn from one another, form partnerships and strengthen programs benefiting people with Down syndrome and their families.

“Serving the Down syndrome community for the past 25 years has been one of the greatest privileges of my life,” says David Tolleson, GLOBAL Vice President of Strategic Alliances. “During my five years at GLOBAL, I have been deeply inspired by Michelle’s leadership and by an organization whose advocacy has secured historic investments in research and medical care—work that has contributed to an approximately 10-year increase in life expectancy for people with Down syndrome since 2003. What Michelle has built, and what I have been privileged to help advance with our extraordinary GLOBAL team, is truly remarkable. It is just like Michelle to honor me in a way that touches my heart most: by helping people with Down syndrome and their families when they are facing their greatest challenges.”

 

The new award program is already inspiring support. Shawna Lucas, a longtime friend of Tolleson’s, GLOBAL supporter, and the first donor to the David Tolleson GLOBAL Emergency Relief Awards, made her gift even before the program was formally announced.

“I am honored to be part of this GLOBAL campaign to raise funds for the families of self-advocates in need,” says Lucas. “Growing up with a brother who had Down syndrome, I am keenly aware of the sacrifices made by families who are dealing with complex medical issues, as well as routine “life” issues. This fund will help bridge the gap when help is needed.”

“David has a rare gift for making every person feel welcomed, respected and important,” says former NDSC President Marilyn Tolbert. “I have experienced firsthand how his warmth, collaborative leadership and genuine love for people with Down syndrome helped create a community where families, self-advocates and organizations could flourish. The David Tolleson GLOBAL Emergency Relief Award Program is a wonderful reflection of David’s heart and a fitting way to continue his extraordinary legacy of service.”

The David Tolleson GLOBAL Emergency Relief Award Program

The new program builds upon GLOBAL’s experience responding rapidly to families and organizations in crisis. During the COVID-19 pandemic, GLOBAL redirected its Education and Employment Awards to establish Emergency Relief GLOBAL Grants.

Through those efforts, GLOBAL provided emergency support to more than 200 people with Down syndrome and their families, as well as Down syndrome organizations serving communities in need. The awards helped provide groceries and other basic necessities, medical care and supplies, housing and utility assistance, transportation and emergency organizational support.

The David Tolleson GLOBAL Emergency Relief Award Program will carry this experience forward by providing timely assistance in circumstances such as:

  • Urgent medical, transportation or accessibility needs not covered by insurance or other programs;
  • The loss of housing, food or essential utilities following a family crisis or natural disaster;
  • The death, hospitalization or sudden loss of income of a primary caregiver; including support for relocation following the unexpected death of a self-advocate’s primary caregiver.

The program will begin by providing multiple grants of approximately $1,000. As additional funds are raised, GLOBAL hopes to increase the number of people served and, where circumstances warrant, the amount of assistance available.

Although he is retiring from his full-time position, Tolleson will continue his service to the community as a member of the GLOBAL Emergency Relief Committee that will review applications, help select recipients and present the awards.

“David has always seen the person behind every program, partnership and award,” Whitten continued. “This program reflects his instinct to listen, welcome people in and help wherever the need is greatest. Our goal is to raise $250,000 so that David’s extraordinary legacy of compassion and service can continue to provide hope and tangible support to families experiencing the most difficult moments of their lives.”

Donations made to the David Tolleson GLOBAL Emergency Relief Award Program through December 31, 2026, will be matched dollar for dollar, up to a total of $50,000, by a generous anonymous donor.

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