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18th Annual Event Raises $2.6 Million for Groundbreaking Research and Medical Care While Celebrating Diversity, Inclusion and Achievement

You Can Support People with Down Syndrome: Donate Now!

Relive the Magic: Step & Repeat Photos Online | More Photos Coming Soon

Hollywood stars and self-advocates filled the red carpet in a powerful show of support for Global Down Syndrome Foundation (“GLOBAL”). Among the notable attendees were Jessica Biel, Jeremy Renner, Jane Lynch, Kevin Iannucci, Lauren Potter, John C. McGinley, Amanda Booth, Alexis Floyd, Anthony Hill, Niko Terho, Sarah Bock, Max Carver, Shelley Hennig, Beverley Mitchell, Matthew Von Der Ahe, and James Day Keith, all united to champion GLOBAL’s mission to significantly improve the lives of people with Down syndrome through Research, Medical Care, Advocacy & Education.

The night of glamour, gratitude, and inspiration lit up the Sheraton Denver Downtown Hotel as GLOBAL hosted its 18th annual Be Beautiful Be Yourself Fashion Show on Saturday, October 18, 2025. The unforgettable evening attracted over 1,400 guests from across the U.S. and around the world, raising $2.6 million.

Recognized as the largest and most celebrated Down syndrome fundraiser in the world, GLOBAL’s Be Beautiful Be Yourself Fashion Show has raised more than $33 million cumulatively since its inception, transforming research and tangible health outcomes for thousands of children and adults with Down syndrome.

While celebrities provided star power to the event, it was the 21 models who happen to have Down syndrome who truly stole the spotlight, especially GLOBAL’s 2025 Ambassador, Guion Macsovits. A charismatic freshman at Regis University, Guion walked the runway alongside his friend, two-time Academy Award nominee Jeremy Renner, who introduced Guion as “the real superhero.” Guion received a standing ovation from the audience, including 21 proud family members who traveled from Memphis to celebrate his achievements. Their presence brought palpable warmth to the room, embodying the night’s theme of inclusion and empowerment.

Zaya Biel, a GLOBAL Ambassador alum, also graced the runway alongside her godmother and aunt, the award-winning actor and producer Jessica Biel. The full model lineup and video clips from the fashion show will be released later this week.

“We are profoundly grateful to our generous donors and Ambassadors, including Guion, Clarissa, Louie, Zaya, Chase, Tucker, Sam and Sophia, who returned to our Be Beautiful Be Yourself Fashion Show in full force to support GLOBAL,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Our event highlights that people with Down syndrome bring together all walks of life and create an evening of unconditional love, magical inspiration, and tangible progress towards elongating life and improving health outcomes.”

The 2025 Quincy Jones Exceptional Advocacy Awards were presented to five-time Emmy, two-time SAG Award, and Golden Globe Winner Jane Lynch and Champions breakout star Kevin Iannucci. In 2009, iconic music legend Quincy Jones established his namesake award with GLOBAL which quickly became the organization’s highest honor to recognize those who made an impact on the lives of people with Down syndrome. Quincy was a staunch GLOBAL supporter who sadly passed away last year.

“GLOBAL and the Be Beautiful Be Yourself Fashion Show put people with Down syndrome exactly where they belong: in the spotlight. Center stage. Not in the background or on the sidelines, but as the stars,” says Jane Lynch, reflecting on the evening. “GLOBAL is pushing for a world where inclusion isn’t just a nice idea but an everyday reality.”

Kevin Iannucci moved the audience with a heartfelt speech about perseverance and belonging:

“After touring the GLOBAL offices in June, I told my mom it was a dream of mine to receive this award someday,” said Iannucci. “That day, Michelle surprised me with the news that I was the 2025 recipient. I was overwhelmed and started crying — but they were happy tears. I believe this world needs diversity, equity, and inclusion, and we should speak up for those who cannot speak for themselves. People with Down syndrome can do amazing things when given the opportunity. We want to be accepted and included.”

Local 9NEWS anchors Kim Christiansen and Phil Lipof hosted the evening with warmth and humor, guiding guests through an unforgettable program.

Twenty-one extraordinary models who happen to have Down syndrome walked the runway alongside Hollywood’s finest, and devoted community supporters. Among them were Denver Broncos Cheerleaders Brittany and Sophia, whose radiant energy and genuine connection with the models brought even more joy to the stage.

The event was co-chaired by Jay Mills & Kiana Akina and Meg & Andy Kauth, whose dedication and creativity helped deliver one of GLOBAL’s most successful events to date.

Jay Mills and Kiana Akina shared: “Every year, this show proves that love and science together can move mountains. Seeing so many people come together for GLOBAL — to celebrate inclusion, to fund research, and to change lives — has been deeply inspiring. We’re honored to help carry this mission forward.”

Meg and Andy Kauth added, “This cause touches our family deeply. Having two nieces with special needs, we’ve seen firsthand how much progress depends on understanding, compassion, and research. We were so moved that our nieces got to walk in the fashion show. GLOBAL gives families like ours hope, and tonight, that hope was shining on stage.”

The live auction, led by Grant Snyder, featured exclusive experiences and one-of-a-kind items that drove spirited bidding in support of GLOBAL’s mission. Highlights included a chance to walk the red carpet at the upcoming premiere of Jessica Biel’s newest film Matchbox, a bike ride or golf outing with Lance Armstrong, a New Year’s Eve Dinner with Peter Kudla, exclusive experiences with several Denver Broncos players, luxury getaways, and dining opportunities with stars Max Carver, Shelley Hennig, and Beverley Mitchell.

Proceeds from the Be Beautiful Be Yourself Fashion Show directly fund GLOBAL’s world-class affiliates on the Anschutz Medical Campus — the Crnic Institute for Down Syndrome, the Alzheimer’s & Cognition Center, and the Sie Center for Down Syndrome at Children’s Hospital Colorado, as well as the GLOBAL Adult Clinic at Denver Health. Together, these institutions are pioneering transformative research and comprehensive medical care for people with Down syndrome worldwide.

The event’s success reflects the generosity of GLOBAL’s Leadership Circle, Sponsors, Awardees, Models, Ambassadors, Partner Organizations, Celebrities, Self-Advocates ,and Families.

To view photos, videos, or to make a donation, visit bebeautifulbeyourself.org.
For more information about the Global Down Syndrome Foundation, visit globaldownsyndrome.org.

DENVER, COLORADO – OCTOBER 18: Fashion show models onstage at Global Down Syndrome Foundation’s 18th Annual Be Beautiful Be Yourself Fashion Show at Sheraton Downtown Denver Hotel on October 18, 2025 in Denver, Colorado. (Photo by Tom Cooper/Getty Images for Global Down Syndrome Foundation)

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 33 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, Instagram, X, LinkedIn, and YouTube.

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Experience the Magic at the Be Beautiful Be Yourself Fashion Show, the Largest Down Syndrome Fundraiser in the World

You Can Support People with Down Syndrome: Purchase Tickets, Donate or Sponsor a Model!

The Be Beautiful Be Yourself Fashion Show is the largest annual Down syndrome fundraiser in the world, attracting over 1,400 attendees and having raised a cumulative $31 million for life-saving research and medical care. Proceeds go to the Global Down Syndrome Foundation (GLOBAL), supporting 400 scientists and medical professionals serving thousands of children and adults with Down syndrome from the U.S. and around the world. Each year, the event recognizes a GLOBAL Ambassador, two Quincy Jones Exceptional Advocacy Awardees, and the Event Co-Chairs. The event finale is an ovation-worthy fashion show featuring beautiful models who happen to have Down syndrome and A-list celebrities. A sumptuous three-course meal, and one-of-a-kind live and silent auction items are also part of the evening many describe as “magical.”

WHEN & WHERE

Saturday, October 18, 2025

5:00 PM – Receptions/Silent Auction; 5:30 PM – Red Carpet; 7:00 PM – Dinner/Live Auction/Honorees & Awards; 8:30 PM – Fashion Show; 9:30 PM After Party

Sheraton Denver Downtown Hotel, 1550 Court Place, Denver, CO 80202

WHO

Jessica Biel – Jessica Biel is an Emmy-nominated actor and producer known for her acclaimed roles in The Sinner, Limetown, The Illusionist, Candy, The Better Sister, and dozens of other feature films and series. Jessica is proud to support GLOBAL’s research and medical care, which has had a positive impact on her niece, Zaya, who happens to have Down syndrome. Zaya is a GLOBAL Ambassador whose parents are also deeply involved with GLOBAL and the Sie Center for Down Syndrome at Children’s Hospital Colorado. Jessica will walk the runway with Ambassador Zaya at this year’s event.

Jeremy Renner – Jeremy Renner is a two-time Academy Award nominee and is one of Hollywood’s most versatile and respected actors. Beyond his critically acclaimed roles in films such as The Hurt Locker and The Town, Jeremy is known for playing Hawkeye in the Marvel Cinematic Universe Avengers films and for his role in the Mission Impossible franchise.  After attending the fashion show in 2019, Jeremy formed a bond with GLOBAL Ambassador Guion Macsovits with whom he will walk the runway at this year’s event.

Jane Lynch – recipient of GLOBAL’s most prestigious honor, the 2025 Quincy Jones Exceptional Advocacy Award.

Kevin Iannucci – recipient of GLOBAL’s most prestigious honor, the 2025 Quincy Jones Exceptional Advocacy Award.

Guion Macsovits – 2025 GLOBAL Ambassador

Lauren Potter – Actor, Glee

John C. McGinley – Award-winning Actor, Quincy Jones Exceptional Advocacy awardee & GLOBAL Board Member

Amanda Booth – Model, Actor, Quincy Jones Exceptional Advocacy awardee, Advocate

Shelley Hennig – Actor, Teen Wolf

Max Carver – Actor, Teen Wolf

Alexis Floyd – Actor, Inventing Anna & Grey’s Anatomy

Anthony Hill – Actor, Grey’s Anatomy

Niko Terho – Actor, Grey’s Anatomy

Matthew Von Der Ahe – Actor, Champions

James Day Keith – Actor, Champions

Sarah Bock – Actor, Severance

Beverley Mitchell – Actor, 7th Heaven

Kim Christiansen – 9NEWS Anchor

Phil Lipof – 9NEWS Anchor

Michelle Sie Whitten – President & CEO, Global Down Syndrome Foundation

Dr. Joaquín Espinosa – Executive Director, Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus, University of Colorado Boulder

Dr. Nicole Bauman – Director, Sie Center for Down Syndrome, Children’s Hospital Colorado

Jay Mills & Kiana Akina and Andy & Meg Kauth, Event Co-Chairs

WHY

Down syndrome is the leading cause of developmental delay in the world, affecting an estimated 400,000+ Americans and millions worldwide. Yet it has been one of the least funded genetic conditions by our federal government. GLOBAL is the largest U.S. non-profit working to save lives and dramatically improve health outcomes for people with Down syndrome through Research, Medical Care, Education & Advocacy.

GLOBAL’s annual Be Beautiful Be Yourself Fashion Show is the largest annual Down syndrome fundraiser in the world, raising critical funds for government advocacy, breakthrough research, life-saving medical care and more. The event brings together 1,400 attendees, representing multiple stakeholders in the Down syndrome community, to celebrate major new federal research funding increases, impactful science at the Crnic Institute for Down Syndrome and at the Alzheimer’s & Cognition Center, as well as transformative care at the Sie Center for Down Syndrome and the GLOBAL Adult Clinic.

The event allows GLOBAL to truly deliver on its mission of elongating life and dramatically improving health outcomes for children and adults with Down syndrome.

HOW TO SUPPORT

Tickets and Table Sponsorships,  can be purchased online in addition to Model Sponsorships & Donations.  Volunteer applications will continue to be processed until October 10, 2025.

To cover the event or receive photos and/or videos, contact Trisha Davis- trishdavis0707@gmail.com at (818) 640-9259 OR Anca Elena Call – acall@globaldownsyndrome.org at (720) 320-3832.

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

New study in Nature Communications highlights need for personalized medicine tailored to different life stages in individuals with Down syndrome

AURORA, Colo. (Sept. 25, 2025) – In a groundbreaking new study published in Nature Communications, researchers from the Linda Crnic Institute for Down Syndrome (Crnic Institute) at the University of Colorado Anschutz discovered important differences in the physiological changes observed in over 300 individuals with Down syndrome across the lifespan.

The study is part of the ongoing Human Trisome Project, a large, detailed cohort study of people with Down syndrome, including deep annotation of clinical data, multi-omics datasets, 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 between research participants with Down syndrome versus control participants without Down syndrome at different life stages. They observed that triplication of chromosome 21, or trisomy 21, the genetic condition that causes Down syndrome, leads to age-specific effects during childhood, adolescence, and various stages of adult life. They identified key biological processes that are consistently dysregulated at all ages as well as those that are dysregulated only during specific age ranges.

“These results reveal for the first time that trisomy 21 changes human biology in unique ways as persons with Down syndrome grow and age,” said Joaquín Espinosa, PhD, executive director of the Crnic Institute, professor of pharmacology, principal investigator of the Human Trisome Project, and one of the senior authors of the paper. “Whereas some effects of the extra chromosome are observed throughout life, such as immune hyperactivity and dysregulated oxygen metabolism, other effects occur only in children or only in adults.”

“The magnitude of these age-specific changes is remarkable,” explained Neetha Paul Eduthan, MS, one of the lead authors of the paper. “When examining the genes, proteins, metabolites, and immune cell types affected by trisomy 21 in children versus adults, the changes that are unique to one age group always outnumber those that are conserved across the lifespan.”

To put these observations into perspective, the team also analyzed the temporal effects of the sex chromosomes, or sex karyotype, defined as XX for females and XY for males.

“This analysis revealed the profound impacts of puberty on human biology,” explained Micah Donovan, PhD, instructor of pharmacology and co-lead author of the study. “The molecular differences between young boys and girls are negligible in the first decade of life, but with the onset of puberty and gonad activation, vast biological changes are observed across the sexes, including important differences in gene expression, metabolism, and immune function.”

The study team also employed advanced computational approaches to elucidate how human biology changes from early childhood to late adult life, and how these temporal changes are affected by trisomy 21.

“We identified eight major temporal trajectories for gene expression, protein levels, metabolite levels, and immune cell frequencies in the bloodstream,” said Matthew Galbraith, PhD, associate research professor of pharmacology, director of the Data Sciences Program at the Crnic Institute, and one of the senior authors of the paper. “Biological aging is not a linear process, and our analyses provide an unprecedented view of the developmental trajectories of more than 20,000 biological data points from 6-month-old babies to sexagenarians.”

The Crnic Institute study team has already embarked on several follow-up studies, including new investigations of impaired musculoskeletal growth and accelerated immune aging characteristic of Down syndrome.

“This is another important breakthrough from our scientists at the Crnic Institute that we hope will lead to more personalized medicine and effective treatments for people with Down syndrome at different ages,” said Michelle Sie Whitten, president & CEO of Global Down Syndrome Foundation (GLOBAL), a partner and an affiliate organization of the Crnic Institute. “As a mother of a brilliant 22-year-old with Down syndrome, I am eager to understand how this new knowledge may elongate life and improve the health of millions of people with Down syndrome across the world. We are proud that GLOBAL’s advocacy work with Congress and with the National Institutes of Health (NIH) has led to the establishment of the trans-NIH Down syndrome funding initiative, the INCLUDE Project, that underwrites this and numerous other groundbreaking studies and clinical trials.”

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 Global Down Syndrome Foundation 

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,500 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the 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 and Instagram.

This year’s GLOBAL Education Awards will fund 14 programs—from Alzheimer’s education initiatives to fitness classes for people with Down syndrome.

Denver – August 29, 2025 – Global Down Syndrome Foundation (GLOBAL) is pleased to announce that 14 Down syndrome organizations in the United States and beyond have been selected to receive GLOBAL Education Awards. The 2025 awards bring GLOBAL’s investment in local medical, healthcare, and research funding to nearly $1.3 million since the program’s inception. GLOBAL has given out a total of 359 Education, Employment and Emergency Relief Awards supporting approximately 25,000 individuals with Down syndrome, families and professionals.

“GLOBAL believes in the power and heart our Organization Members bring to their communities each and every day,” says Michelle Sie Whitten, President & CEO of GLOBAL. “Our goal with these awards is to empower meaningful change for the families they serve.”
David Tolleson, Vice President, Strategic Alliances, concurs. “It is such an honor to work alongside so many friends in our community who support GLOBAL’s mission to improve health outcomes for our friends and family members with Down syndrome.”
This year’s recipients are in California, Delaware, Florida, Indiana, Nebraska, New Mexico, North Carolina, Tennessee, Texas, Mexico, and Uganda.

Mildred Katusabe, founder of Rowan’s Down Syndrome Centre, expressed her gratitude, noting, “We will ensure that it will make a big impact on the situation of people with Down syndrome in Uganda!”

“Support for our adults is definitely an area that has many gaps,” says Anne Dichele, Executive Director of Gold Coast Down Syndrome Organization in Boca Raton, Florida. “With GLOBAL’s Award we can equip families with information and strategies around Alzheimer’s in Individuals with Down Syndrome which unfortunately is something our adults are highly predisposed to. With evidence-based guidelines and this GLOBAL award we can begin to make a tangible difference.”

The 2025 GLOBAL Education Award recipients and their funded programs are as follows:

Adult Disability Medical Healthcare (Atlanta, GA): Self-Advocacy for Healthcare Training in Teens and Adults with Down Syndrome and their Family Members/Caregivers will present educational webinars on life skill topics for ADMH patients to encourage greater understanding and compliance with their treatment plans.

Black Down Syndrome Association (Fortville, IN): Funds will help support the first BDSA Family Reunion Conference a 3-day event created to provide education, connection, and celebration for Black families of individuals with Down syndrome.

Down Syndrome Alliance of the Midlands (Omaha, NE): The Cognitive Collective is designed to enhance cognitive skills – memory, attention, engagement, speed, and accuracy through 3 programs – “Dancing Beyond Limits”, “Drumming for Wellness”, and “All Abilities Gaming.”

Down Syndrome Association of Central Texas (Austin, TX): Pathway to Care Packages will equip healthcare professionals with the tools, resources, and training required to deliver an informed and accurate Down syndrome diagnosis. Information will also be provided to new parents.

Down Syndrome Association of Delaware (Newark, DE): Power to Marc is a live webinar and e-learning course to introduce the tools and process steps so that people with disabilities can participate in their own care without the use of restraints or sedation.

Down Syndrome Association of Memphis & the Mid-South (Cordova, TN): The Down to Move Wellness Series – Water Wise & Taekwondo program will offer weekly adaptive swim lessons and taekwondo for families to encourage physical movement, self-discipline, and emotional well-being.

Down Syndrome Connection of the Bay Area (Danville, CA): Funds will support the Empowering Every Stage: Medical and Life Planning for Individuals with Down Syndrome conference for parents/caregivers, medical and mental health providers, and adults with Down syndrome.

Down Syndrome Foundation Uganda (Kampala, Uganda): The Down Syndrome Clinical Excellence Training program will enhance healthcare provided at birth and before discharge from the hospital.

GiGi’s Playhouse – Orange County (Laguna Hills, CA): GiGiFit is a 15-week, evidence-based fitness program for self-advocates which combines physical therapy principles with group fitness classes to build strength, improve endurance, and promote wellness. The program also includes education on nutrition to promote healthy meal planning.

Gold Coast Down Syndrome Organization (Boca Raton, FL): The Understanding Alzheimer’s in Individuals with Down Syndrome through Knowledge, Action, and Hope conference will equip families with information and strategies they need as their loved one with Down syndrome ages.

North Carolina Down Syndrome Alliance (Raleigh, NC): The Medical Outreach/UNC Clinic program will provide support education on best practices, the GLOBAL Medical Care Guidelines for Adults with Down Syndrome, delivering a diagnosis, and more.

Rio Grande Down Syndrome Network (Albuquerque, NM): The Partners in Care: Down Syndrome Medical Education Initiative will work with local hospitals and medical schools to provide up-to-date, evidence-based training to medical professionals to increase knowledge, skills, and sensitivity among providers working with individuals with Down syndrome.

Red Down México (Puerto Morelos, Mexico): Clinica T21 en línea – Circuito de Atención Integral 2025 is a telehealth initiative to deliver comprehensive medical, psychological, and educational care across Mexico.

Rowan’s Down Syndrome Awareness Centre (Hoima, Uganda): Research and Development of a Delivery System for Medical/Therapy Support for People with Down syndrome in Uganda will develop systems to support research information, participation, and access for healthcare professionals and individuals with Down syndrome.

To learn more about the GLOBAL Membership Awards, visit https://www.globaldownsyndrome.org/global-awards/.
To learn more about individual and organization GLOBAL memberships, visit https://www.globaldownsyndrome.org/global-membership/.
To learn more about Global Down Syndrome Foundation, visit https://www.globaldownsyndrome.org/.

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 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™. 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, and LinkedIn.

GLOBAL’s Award-winning Be Beautiful Be Yourself Fashion Show will honor GLOBAL Ambassador Guion Macsovits and Quincy Jones Exceptional Advocacy Awardee Kevin Iannucci

DENVER – July 24, 2025 – Today, Global Down Syndrome Foundation (GLOBAL) announced two-time Academy Award nominee Jeremy Renner and a fantastic celebrity lineup for its annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

“I’m honored to be invited back to GLOBAL’s amazing event and to hang out with some of the coolest people who happen to have Down syndrome,” says Jeremy. “I’m excited to give back in a meaningful way, to help raise funds for research that will lead to healthier, longer lives. It’s going to be a great night, and I hope we can break some records!”

“We are thrilled to have Jeremy Renner, Ambassador Guion Macsovits, and Quincy Jones Awardee Kevin Iannucci join our GLOBAL family,” says GLOBAL President & CEO, Michelle Sie Whitten. “Our Down syndrome community is so grateful that Jeremy is fully recovered, and we are excited to provide his New York Times bestseller, My Next Breath, as a gift for attendees. Guion and Kevin are both brilliant and beautiful role models who are helping us break stereotypes and showing the world that if society gives us a chance, people with Down syndrome can reach their goals and live their dreams. But we have to have good health and a long life to succeed, and that’s where we come in.”

The event will honor Jeremy’s friend, GLOBAL Ambassador Guion Macsovits, and Quincy Jones Exceptional Advocacy Awardee, Champions actor Kevin Iannucci. They will join award-winning film and TV actor 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 anchor Kim Christiansen, who will emcee the event. In its 17^th year, the award-winning event will be held on Saturday, October 18 at the Sheraton Denver Downtown Hotel. Proceeds will benefit GLOBAL’s life-saving and transformative research and medical care.

“I’m excited to have one of my favorite superheroes, Jeremy Renner, back at the fashion show,” says Ambassador Guion Macsovits. “I went to his house and to an Avengers movie premiere. He told me I was a ‘real superhero.’ It was one of the best nights of my life.”

Guion Macsovits is a fun-loving 18-year-old with a heart as big as his smile. He recently graduated from Cherry Creek High School where he was known for his kindness, thoughtfulness, and the way he naturally makes people feel valued. Whether holding the door between bells, checking in on a friend, or offering a word of encouragement, Guion has a way of making the world a little brighter. His emotional intelligence is off the charts, and he leads with empathy in everything he does. Ambassador Guion and his family will work closely with GLOBAL to make sure it raises both funds and awareness towards elongating life and improving health outcomes for children and adults with Down syndrome.

“I am so grateful to the Global Down Syndrome Foundation for giving me this important award,” says Kevin. “It is even more meaningful as we lost the iconic Quincy Jones last year. I hope that all my Champions friends and castmates are going to join us for this amazing event that is helping to save lives through research and medical care. Can’t wait to raise some funds and hit the runway!”

Kevin Iannucci was born and raised in Raleigh, North Carolina. He has quickly distinguished himself as one of today’s most sought-after young talents with Down syndrome, with an impressive body of work that has earned him a reputation as a favorite among prestigious directors. He will receive GLOBAL’s highest honor – the Quincy Jones Exceptional Advocacy Award. Past recipients include Jamie Foxx, DeOndra Dixon, 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, Marián Ávila, and Beverly Johnson.

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 $27 million in 2016 to over $140 million in 2024.

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, and a dream team of medical professionals providing excellent medical care to over 2,500 patients from 33 states and 10 countries at the Anna and John J. Sie Center at Children’s Hospital Colorado.

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

To sponsor a table or buy tickets, visit: https://bebeautifulbeyourself.org/be-beautiful-be-yourself-fashion-show-tables/ orhttps://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 Down Syndrome Foundation and the National Down Syndrome Congress Attract Record NDSC Annual Convention Registrants

DENVER, DALLAS, Jul 17, 2025 — Global Down Syndrome Foundation (GLOBAL) and the National Down Syndrome Congress (NDSC) proudly announce internationally renowned Down syndrome experts for the 12^th annual GLOBAL Research & Medical Care Roundtable (GLOBAL Roundtable) to be held on Thursday, July 24^th at the Hilton Anatole in Dallas. Offered as a free resource with NDSC Annual Convention registration, the event will cover cutting-edge scientific breakthroughs, clinical trials, medical best-practices and more.

This year’s GLOBAL Roundtable has already reached a record 600 registrants and is nearing full capacity. A total of over 5,000 self-advocates, parents, and professionals have been educated through the roundtable since inception. Surveys consistently rate the GLOBAL Roundtable an impressive 4.8 out of 5, underscoring its impact and value.

This year’s GLOBAL Roundtable will include welcome remarks from NDSC Executive Director, Jim Hudson, GLOBAL President & CEO, Michelle Sie Whitten, GLOBAL Vice President for Research and Medical Care, Bryn Gelaro, and Advocate, Public Speaker, Artist, Entrepreneur, and Star of A&E’s Emmy Award-Winning Docuseries “Born This Way,” Megan Bomgaars. The GLOBAL Roundtable slate of renowned Down syndrome experts for 2025 includes:

• Joaquín Espinosa, PhD, Executive Director, Linda Crnic Institute for Down Syndrome; Professor, Department of Pharmacology at the University of Colorado School of Medicine: An Important Update on Groundbreaking Clinical Trials & Research Benefiting People with Down Syndrome
• Michael Rafii, PhD, MD, Professor of Clinical Neurology at the Keck School of Medicine and Medical Director of the Alzheimer’s Therapeutic Research Institute: Recent Advancements in Alzheimer’s: Cutting-Edge Diagnostics, Treatment, and the Unique Risks for Individuals with Down Syndrome
• Laurie Ryan, PhD, Chief of the Clinical Interventions and Diagnostics Branch in the Division of Neuroscience at the National Institute on Aging: Lifestyle Factors that Affect Individuals with Down Syndrome Across the Lifespan: Insights from the NIH INCLUDE Project
• Noemi Spinazzi, MD, Medical Director, Down Syndrome Clinic at UCSF Benioff Children’s Hospital Oakland; Director, Down Syndrome Center of Excellence at Children’s Specialized Hospital: Partnering with your Pediatrician to Support Language: Early Medical and Developmental Intervention
• Ignacio Tapia MD, MS, Chief of the Division of Pediatric Pulmonology at the University of Miami Miller School of Medicine: New and Exciting Treatments for People with Sleep Apnea
• Thessa Hilgenkamp, PhD, Assistant Professor Physical Therapy at University of Nevada Las Vegas: How People with Down Syndrome Stay Fit Throughout the Life Span

Capacity is limited so register for the NDSC Annual Convention and sign up for the GLOBAL Roundtable as an added benefit today!

In addition to the roundtable, GLOBAL and NDSC publish a free Prenatal & Newborn Pamphlet, and support each other’s key initiatives such as the GLOBAL Adult Medical Guideline and the NDSC Sibling and Educational toolkits and conferences.

Last  year, GLOBAL and NDSC announced a multi-year collaboration, formalizing over a decade of partnership in research, medical outreach, and education.

About Global Down Syndrome Foundation

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 2,500 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, 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, and LinkedIn.

About the National Down Syndrome Congress Annual Convention

Each year, thousands of people from around the globe attend the National Down Syndrome Congress Convention. For many, it’s to hear from world-renowned experts; for others, it’s to experience a one-of-a-kind community event. The convention includes multiple conferences for educators, siblings, youth and adult self-advocates, and their unparalleled Advocacy Training Boot Camp, all alongside the GLOBAL Medical Research Roundtable.

About the NDSC

The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome. Founded in 1973, they are the leading national resource of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of diagnosis, whether prenatal or at birth, through adulthood.

Denver, Stillwater, Minn. –June 3, 2025 – Today, Global Down Syndrome Foundation (GLOBAL) and Down Syndrome Diagnosis Network (DSDN) are proud to announce a multi-year collaboration agreement to educate  moms of children with Down syndrome – particularly those in the early years – about important medical care resources and research opportunities.

The agreement  builds on GLOBAL and DSDN’s past five year collaboration and ensures hundreds of DSDN Rockin’ Mom® Retreat attendees can continue to participate in the GLOBAL Research & Medical Care Roundtable (GLOBAL Roundtable) as a free benefit. It also provides new collaboration and support for DSDN’s core parent resources, including peer-to-peer support groups and online communities hosted in the DSDN App, where families connect by birth year, co-occurring conditions, and shared identities.

The GLOBAL Roundtable has educated over 900 moms of infants and young children on cutting-edge scientific breakthroughs, clinical trials, medical best practices and more. Surveys associated with the GLOBAL Roundtable consistently average 4.8 out of 5, highlighting its impact. Anyone who has registered for the DSDN Rockin’ Mom® Retreat can register for the GLOBAL Roundtable for free. This year’s DSDN Rockin’ Mom® Retreat will be held in Pine Mountain, Georgia from September 19-20. The GLOBAL Roundtable includes welcome remarks from DSDN Executive Director, Melissa Shutwell, GLOBAL President & CEO, Michelle Sie Whitten, and GLOBAL Vice President for Research and Medical Care, Bryn Gelaro. Below is the 2025 GLOBAL Roundtable panel of renowned Down syndrome experts:

• Joaquín Espinosa, PhD, Executive Director, Linda Crnic Institute for Down Syndrome (Crnic Institute) –  Espinosa will discuss the latest research topics (including the first pediatric immune system dysregulation Jak Inhibitor clinical trial) from the Linda Crnic Institute for Down Syndrome.
• Nicole Baumer, MD, MEd, Director, Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado – Baumer will provide an overview of neurodevelopmental conditions (including Autism, ADHD) in early childhood and ways to support.
• Emily McCourt, MD, Chief of Pediatric Ophthalmology, University of Colorado Anschutz Medical Campus – McCourt will discuss the eye care needs for children with Down syndrome during their first few years of age (including keratoconus, strabismus, and glaucoma).
• Sujata Bardhan, MS, PhD, Program Director in the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH)– Dr. Bardhan will discuss The NIH INCLUDE Project: Accelerating Research Discoveries for People with Down Syndrome Across the Lifespan (including potential for families to get involved and participate).

“DSDN has supported more than 25,000 parents through our online peer-to-peer support groups over the past 10 years and has welcomed over 3,000 moms to our annual Rockin’ Mom Retreats,” says DSDN Executive Director and mom to a 9-year-old with Down syndrome, Melissa Shutwell. “The Rockin’ Mom Retreat is a chance to connect, recharge, and be inspired—and thanks to GLOBAL’s support, it’s also a space where attendees can stay informed about the latest research and medical care for their children. The GLOBAL Roundtable is a favorite among many of our moms, and we’re grateful to continue this collaboration to keep such a valuable resource at the heart of our retreat for years to come.”

“We have supported DSDN from its very early years, and we are amazed and impressed at how fast the organization has grown,” says Michelle Sie Whitten, GLOBAL President & CEO, and parent of a young adult with Down syndrome. “The information and network they provide for moms and families is so important and we are proud to be a part of that. Any mom who hasn’t attended a Rockin’ Mom Retreat should absolutely check it out!”

“Every year it is exciting to work with Melissa and her team and bring together world renowned Down syndrome experts to speak at the DSDN Rockin’ Mom Retreat GLOBAL Roundtable,” says Bryn Gelaro, GLOBAL Vice President of Research & Medical Care. “While the complimentary mimosa or sangria makes things fun, these moms are super smart and contribute so much to the conversation. I’m convinced this not only helps their own children but their local communities as well.”

To learn more about the DSDN Rockin’ Mom® Retreat, visit https://www.dsdiagnosisnetwork.org/mom-retreat-registration.

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About the DSDN

The Down Syndrome Diagnosis Network (DSDN) is the leading organization dedicated to supporting families who receive a Down syndrome diagnosis for their child. Since 2014, DSDN has supported more than 25,000 families through peer-to-peer support, medical condition-specific groups, educational resources, and community-building experiences. DSDN creates safe, inclusive spaces for parents to share their experiences, access real-time support, and build lifelong relationships that strengthen their ability to care for both their children and themselves.

In addition to its robust parent network, DSDN is a national leader in improving the Down syndrome diagnosis experience. The organization partners with healthcare professionals to provide training, resources, and direct feedback from families to ensure that diagnoses are delivered with empathy, accuracy, and immediate access to support. Through this work, DSDN is helping raise the standard for how Down syndrome diagnoses are shared and received.

DSDN is best known for its vibrant online support groups and its annual Rockin’ Mom® and Rockin’ Dad™ Retreats, which have welcomed thousands of parents for weekends of connection, rest, and inspiration.

Learn more at www.dsdiagnosisnetwork.org, and follow DSDN on Facebook, Instagram, LinkedIn, and TikTok.

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,500 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, 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, and LinkedIn.

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Global Down Syndrome Foundation Honored Reps. Aderholt and DeGette at Event that Featured Multiplatinum Artist & Actor Phillip Phillips and Inclusive Dance Team

2025 AcceptAbility Gala Step & Repeat Photos
2025 AcceptAbility Gala Program Highlights Photos

Denver, CO, May 23, 2025 – On Wednesday, the Global Down Syndrome Foundation (GLOBAL) held its seventh annual AcceptAbility Gala, Washington DC’s largest fundraiser for people with Down syndrome, raising $450,000 to support important research and medical care benefiting people with  Down syndrome. Representatives Robert Aderholt (R-AL) and Diana DeGette (D-CO) 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.

“At GLOBAL, we work hard every day to elongate life and improve health outcomes for our loved ones with Down syndrome,” says GLOBAL Co-Founder, President, and CEO, Michelle Sie Whitten. “Last night we brought together a room full of bipartisan support from Congress, NIH leadership, self-advocates, families and corporate leaders, all celebrating the impact of GLOBAL’s work and a brighter future for people with Down syndrome. The joy and excitement at our event, and the tangible outcome of our work together, is truly rewarding!”

“People with Down syndrome are a beautiful reminder that we are all fearfully and wonderfully made in God’s image,” says Congressman Robert Aderholt. “I am honored to receive the Quincy Jones Exceptional Advocacy Award from GLOBAL and to support their important mission to extend life and improve health outcomes for individuals with Down syndrome. Last night’s AcceptAbility Gala was truly inspiring. It was a joy to be surrounded by so many incredible self-advocates, their families, dedicated professionals, and fellow Members of Congress. The evening underscored how vital continued investment in Down syndrome research is—not just for improving health—but for affirming the dignity and God-given worth of every life. It sends a powerful message to the world that individuals who are differently-abled have unique value and purpose.”

“It is an honor to be recognized by the Global Down Syndrome Foundation with the Quincy Jones Exceptional Advocacy Award,” says Congresswoman Diane DeGette. “Last night’s AcceptAbility Gala was truly a celebration of people with Down syndrome and what biomedical research at the NIH is doing to improve their lives. I am proud to have reintroduced the bipartisan DeOndra Dixon INCLUDE Project Act earlier this week which will ensure NIH continues to pursue innovative and groundbreaking research that includes people with Down syndrome. It is amazing what GLOBAL and my dear friends John Sie and Michelle Sie Whitten have built at the Crnic Institute and the Sie Center for Down Syndrome in Colorado. Together, we are creating a brighter future for children and adults with Down syndrome.”

Celebrities passionate about the cause included Multiplatinum Artist & Actor, Phillip Phillips; actor, author and public speaker Frank Stephens; author and public speaker David Egan; six-time Emmy® Award-winner Chuck Todd, and three-time Emmy® Award-winner Autria Godfrey who emceed the gala.

The evening was dedicated to long-time GLOBAL supporter and Frank Stephens’ mother, Cornelia “Corny” Stephens. Corny passed away after a long and courageous fight with Alzheimer’s disease. A video tribute also honored music icon Quincy Jones who passed away last November.

Held at the Marriott Marquis in Washington, DC, the event was attended by GLOBAL awardee alums, Representative Richard Hudson (R-NC) who presented the Quincy Jones Exceptional Advocacy Award to Representative Robert Aderholt, Senator John Hickenlooper (D-CO) who presented the award to Representative Diana DeGette, Representative Rosa DeLauro (D-CT) who presented her scholarship award, and Pete Stauber (R-MN).  

Representatives DeGette and Hudson, and Senator Hickenlooper, thrilled the audience when they announced the House and Senate reintroduction of the game-changing bill, the DeOndra Dixon INCLUDE Project Act. The bill will ensure that the trans-NIH Down syndrome funding program called the INCLUDE Project will continue to exist and grow. The bill is a legacy for the 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 Leo Weeks from Herndon, Virginia and the Tom Cole GLOBAL Advancement Award was provided to Gabby Parillon from Lewes, Delaware. Representative Rosa DeLauro was on-hand to personally present the Advancement Award, leaving the audience inspired to do even more for people with Down syndrome and their families.

With the help of GLOBAL Ambassador Tucker Emry and his family, Erin Book Mullen, co-chairs Natalie Farr Harrison and her husband Guy Harrison, and our amazing Sponsors, the inspirational gala attracted 400 attendees and raised $450,000 for GLOBAL’s life-saving research and medical care. GLOBAL supports over 200 researchers on the Anschutz Medical Campus at the Crnic Institute for Down Syndrome and at the Alzheimer’s and Cognition Center, as well as 2,500 patients from 33 states and 10 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.

At the end of the evening, Phillip Phillips wowed the audience not only with his 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 his biggest hits including Gone, Gone, Gone and Home, and solo dancer Robert Wallop and inclusive dance team RhythmXpress delighted attendees with dance performances set to Papa’s Got a Brand New Bag and a Hairspray medley. 

Additional notables in attendance included GLOBAL Chairman John J. Sie, GLOBAL Ambassadors Sophia Whitten, Charlotte (Charley) Fonfara-LaRose, and Abby Ashbrook; Directors from the NIH Drs. Jay Bhattacharya, Richard Hodes, Gary Gibbons, Alison Cernich, Walter Koroshetz, Michael Chiang, Monica Webb Hooper, Anna Mazzucco and Annica Wayman; Jim Hudson and Heather Sachs from the National Down Syndrome Congress, and executives from Black Down Syndrome Association, Down Syndrome Guild of Dallas, Virginia Down Syndrome Association, 321 Foundation, Down Syndrome Association of Jacksonville, and Down Syndrome Association of Delaware.

To learn more about GLOBAL, visit www.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 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 110 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.

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Bipartisan Legislation for Transformative NIH Down Syndrome Research – A Legacy for GLOBAL Ambassador DeOndra Dixon

DENVER – May 22, 2025 — Sens. John Hickenlooper (D-CO) and Jerry Moran (R-KS) and Reps. Diana DeGette (D-CO) and Richard Hudson (R-NC) have reintroduced the DeOndra Dixon INCLUDE Project Act (S.1838/H.R. 3491). Joining as original cosponsors are Sens. Cory Booker (D-NJ) and Markwayne Mullin (R-OK) and Reps. Tom Cole (R-OK), Rosa DeLauro (D-CT), Pete Stauber (R-MN), and Eleanor Holmes Norton (D-DC).

The bill provides statutory authority for the trans-NIH INCLUDE “Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome” Project. As a result of Global Down Syndrome Foundation’s advocacy, the INCLUDE Project was established in 2018 to investigate the co-occurring conditions that affect those with Down syndrome (e.g. Alzheimer’s, autoimmune disorders) and their quality-of-life needs.  It has focused on targeted research on chromosome 21, assembling a large study population of individuals with Down syndrome, and conducting clinical trials that include those with Down syndrome. 

“Hundreds of thousands of Americans live with Down syndrome, and yet its research has been underfunded for decades,” says Senator Hickenlooper. “This bill is named for my friend DeOndra Dixon, who lived a full, vibrant life and wanted the same for all people living with Down syndrome. We are determined to get this bill across the finish line for her, and for every American who will benefit from research on many different health conditions.” 

“Research, supported by the NIH, has helped improve and extend the lives of individuals with Down syndrome, but there is still more to learn,” says Senator Moran. “This legislation will invest in scientific studies on Down syndrome to help members of the Down syndrome community and their families find answers and solutions for the health challenges they face.”

“Down syndrome, the leading cause of developmental delay in the U.S. and worldwide, was the least funded genetic syndrome at the NIH for decades,” says Representative Diana DeGette.  “We have made tremendous strides in new federal investments in Down syndrome research to understand why those living with Down syndrome are so at risk for some diseases, such as Alzheimer’s and autoimmune disorders, and protected from other diseases such as solid tumor cancers. Passage of the DeOndra Dixon INCLUDE Project Act will ensure these successful trans-NIH initiatives continue to make significant scientific advances to improve and extend the lives of people with Down syndrome and millions of other Americans as well.”

“People with Down syndrome enrich our world in many unique ways,” says Representative Hudson. “The DeOndra Dixon INCLUDE Act ensures people with Down syndrome are valued, respected members of society and that NIH is supporting their health, enabling them to live their lives to their full potential – with no barriers or bias or obstacles standing in their way. I am honored to continue and grow research efforts so people with Down syndrome have the long and healthy lives they deserve.”

The legislation is named in honor of the life and legacy of DeOndra Dixon, beloved Global Down Syndrome Foundation (GLOBAL) Ambassador and sister of Academy Award-winning and Grammy Award-winning talent Jamie Foxx. DeOndra was an inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award and she traveled the world promoting awareness and advocacy. She was a talented dancer and musician who performed with her brother at the Grammy Awards.

“We are forever grateful to GLOBAL for creating such purpose for our little sister DeOndra,” says Jamie Foxx. “My sister Deidra and I are so proud of the big difference she made through her advocacy in DC, and now with this bill she will continue to make a difference. There isn’t a day that goes by that we don’t miss her, but today I know she’s dancing up in heaven because this legislation is named after her and will help millions of people with Down syndrome.”

“GLOBAL is truly overwhelmed by the strong bipartisan support for the DeOndra Dixon INCLUDE Project Act that will formally authorize the INCLUDE Project at the NIH and make the project more permanent,” says Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “We couldn’t have come this far without the leadership of HELP Committee leaders Sens. John Hickenlooper and Markwayne Mullin, House Energy & Commerce leaders Reps. Richard Hudson and Diana DeGette, and our appropriation champions Reps. Tom Cole, Rosa DeLauro and Robert Aderholt. We also owe so much to Dr. Joaquin Espinosa for bringing scientific breakthroughs to the table, to Ambassador DeOndra’s beautiful family, and to our original congressional champions, especially those who have children with Down syndrome such as Reps Cathy McMorris Rodgers, Pete Stauber and Eleanor Holmes Norton.”

GLOBAL had advocated for a trans-National Institutes of Health (NIH) Down syndrome research program since its inception in 2009. In 2017, three GLOBAL leaders , including board member, Frank Stephens, testified at the hallmark House Appropriations Labor, Health and Human Services subcommittee hearing on Down syndrome research. Frank’s testimony went viral that evening with 1 million views and today has over 200 million views. Shortly after the hearing, GLOBAL’s long-time advocacy goal was fulfilled, and the NIH established the INCLUDE Project.

Since the INCLUDE Project was established in 2018, the program has funded 389 unique awards within 21 of the 27 NIH institutes investing $434M. Thirteen of these institutes did not participate in Down syndrome research prior to this program. The INCLUDE Project has also supported the development of the clinical trial infrastructure. Prior to the program, there were only two NIH clinical trials focused on people with Down syndrome. In just seven years, the INCLUDE Project has funded fourteen promising clinical trials with possible immediate or short-term impact for people with Down syndrome.

“DSA of Central Oklahoma is a long-time supporter of the Global Down Syndrome Foundation, and their government advocacy work that resulted in the establishment of the trans-NIH Down syndrome research program called the INCLUDE Project,” says Sarah Soell, Executive Director of the Down Syndrome Association of Central Oklahoma. “We know first-hand from our families that the increased research funding is making a difference. We see real progress in the treatment of the many co-occurring conditions that we see in people with Down syndrome, including autoimmune conditions, regression disorder, sleep apnea, Alzheimer’s and more. Given the nearly twenty years of Down syndrome being the least funded genetic condition at the NIH prior to the INCLUDE Project, it is so important to pass this bill!”

Formally authorizing the INCLUDE Project beyond an annual congressional directive will ensure that people with Down syndrome are not left behind when it comes to participating in clinical trials; it will improve health outcomes and improve their quality of life; and it will send a strong message that our society values and wants to invest in the future of our children and adults with Down syndrome and their families.

GLOBAL urges advocates to contact Congress to urge them to co-sponsor and support passage of the DeOndra Dixon INCLUDE Project Act: https://www.globaldownsyndrome.org/deondra-dixon-include-project-act/

GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has multiple clinical trials specifically designed for persons with Down syndrome testing new therapies for Alzheimer’s disease in Down Syndrome, Down Syndrome Regression Disorder, and autoimmune conditions.

To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website at: https://includedcc.org/.

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,700 patients with Down syndrome from 33 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus. 

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information and the award-winning magazine Down Syndrome World^TM . GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome). 

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