Archive for the ‘Press Releases’ Category

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

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.

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.”

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.

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 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

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

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

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

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

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

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

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

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

Key findings from the survey of 633 hospitality professionals include:

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

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

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

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

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

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

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

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

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

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

About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 40 states and 11 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health. GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.

Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, LinkedIn, and YouTube.

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

About the Participating Hotels

The Jacquard, Autograph Collection

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

Hotel Clio, a Luxury Collection Hotel, Denver Cherry Creek

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

Clayton Members Club & Hotel

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

About the Research Partner

SIS International Research

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

Media Contact:

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

Global Down Syndrome Foundation expanding inclusive workforce opportunities worldwide!

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

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

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

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

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

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

2026 GLOBAL Employment Award Recipients (in alphabetical order)

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

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

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

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

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

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

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

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

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

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

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

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

About Global Down Syndrome Foundation

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

Working closely with Congress and the National Institutes of Health, GLOBAL is the leading advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 125 Down syndrome organizations worldwide and is part of a network of Affiliates — the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.

GLOBAL’s widely circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal & Newborn Down Syndrome Information, and the award-winning magazine Down Syndrome World  ™. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world.
Visit globaldownsyndrome.org and follow us on Facebook, X, Instagram, and LinkedIn.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 40 states and 11 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 130 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus, and the GLOBAL Adult Down Syndrome Clinic at Denver Health.

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

Down Syndrome World TM. GLOBAL also organizes the annual AcceptAbility Gala in Washington DC, and

the annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media Facebook, X, Instagram, LinkedIn, and YouTube.

We Need Your Help! Contact Your Members of Congress Today

Get Inspired: View all photos

The Global Down Syndrome Foundation (GLOBAL) concluded a highly successful three-day fly-in to Washington, D.C. earlier this month, bringing together 120 dedicated supporters from 22 states and Washington, DC to advocate for congressional passage of the DeOndra Dixon INCLUDE Project Act (H.R. 3491; S.1838).

Throughout the fly-in, GLOBAL advocates met with 87 Members of Congress and their congressional staff. Meetings included key members of the House Appropriations and Energy & Commerce Committees and Senate Appropriations and HELP Committees to directly address the impact of the National Institutes of Health (NIH) Down syndrome research program called the INCLUDE Project.

“People with Down syndrome bring both sides of the aisle together and that is a beautiful thing,” says GLOBAL President and CEO Michelle Sie Whitten. “Our GLOBAL advocates did an amazing job meeting with Members and staff and explaining the importance of the continuation and increased funding for the NIH INCLUDE Project. We could not have come this far without the leadership and dedication of our Congressional and NIH Champions, dedicated scientists and clinicians, and our brilliant self-advocates and family members.” 

Key Highlights of the 2026 GLOBAL DC Fly-In:

• Training: GLOBAL held a training dinner to review the impact of the DeOndra Dixon INCLUDE Project Act and update advocates on how NIH Down syndrome research is already improving the health of individuals with Down syndrome across the country.
  • The bill is named in honor of the life and legacy of DeOndra Dixon, beloved GLOBAL Ambassador and inspiration behind GLOBAL’s highest honor, the Quincy Jones Exceptional Advocacy Award. DeOndra keynoted at conferences around the country and the world and was a fixture at GLOBAL events along with her big brother Jamie Foxx as well as her loving extended family. She was a talented dancer and musician who performed at the 52^nd Grammy Awards.
• Congressional Briefing: GLOBAL organized a Congressional Briefing attracting over 150 attendees featuring keynote speakers Senator John Hickenlooper (D-CO), Director of the NIH Dr. Jay Bhattacharya, GLOBAL International Spokesperson and Grey’s Anatomy Actor Caterina Scorsone, GLOBAL International Spokesperson and Board Member Frank Stephens, Executive Director of the Crnic Institute for Down Syndrome Dr. Joaquin Espinosa, and President & CEO of GLOBAL Michelle Sie Whitten.

• Advocacy & Bipartisan Support: GLOBAL Advocates met with 87 Member Offices including 18 Member level meetings. To date, there are 24 cosponsors of the DeOndra Dixon INCLUDE Project Act.

“What Michelle, her family and the GLOBAL team have done is truly remarkable. They have literally put Down syndrome research on the map, working with self-advocates and Congress to create a Down syndrome research program at NIH that is already improving health outcomes. With leadership from Senators Jerry Moran, Cory Booker and Markwayne Mullin, we need to codify this work through the DeOndra Dixon INCLUDE Project Act. Every time I hear the words DeOndra Dixon, it puts a smile on my face because she was a joyful warrior,” says Senator John Hickenlooper. “The bill that we are working on, the fact that it has her name, gives it a superpower.”

“At the NIH, we have a long-standing commitment for advancing research on Down syndrome,” says Director of the National Institutes of Health and Acting Director of the Centers for Disease Control and Prevention Dr. Jay Bhattacharya during his speech at the Global Down Syndrome Foundation Congressional Briefing. “Between the fiscal year 2011 and fiscal year 2025, the NIH increased investment in Down syndrome research by 500%. This growth reflects scientific opportunity as well as energy, partnership and persistence of GLOBAL and the Down syndrome community. I look forward to a day people with Down syndrome can live longer and healthier lives.”

“As the proud mom of Pippa, who happens to have Down syndrome, it has been deeply rewarding to partner with Michelle and her wonderful team at GLOBAL,” says GLOBAL International Spokesperson and award-winning Grey’s Anatomy actor Caterina Scorsone. “It is exciting to be part of GLOBAL’s advocacy in DC that will no doubt see the DeOndra Dixon INCLUDE Project Act pass so that people with Down syndrome can live longer, healthier lives. The energy and excitement at our Congressional Briefing and the connectivity made at our meetings was truly inspirational.”

GLOBAL Spokesperson and Quincy Jones Advocacy Awardee, Author, Actor and Public Speaker Frank Stephens provide an important self-advocate perspective at the GLOBAL Congressional Briefing, “Not everyone offers love and acceptance to people with an extra chromosome. Millions of people view our extra chromosome as a mistake to be fixed or eliminated. I know I am lucky to be at the helm of this GLOBAL movement, and to live in the US during this moment in history where I am valued and where I get to tell our government that my life is worth living.”

“Formally authorizing the DeOndra Dixon INCLUDE Project Act 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,” says Executive Director of the Crnic Institute for Down Syndrome Dr. Joaquín Espinosa. “What GLOBAL has done here in DC in transformative, lifesaving and has moved Down syndrome from the least funded genetic condition at the NIH to a period of research renaissance.”

The seventeen local Down syndrome organizations who supported the GLOBAL DC Fly-In were pleased with the results and optimistic that the passage of this landmark bill will happen during the 119^th Congress.

“We were so pleased that our Representative Ann Wagner signed up to cosponsor the DeOndra Dixon INCLUDE Project Act on the spot!” says Executive Director of the Gateway Down Syndrome Association Erin Suelmann. “My brother Andrew played a key role in our meetings, and we are hopeful that Senators Josh Hawley and Eric Schmitt will also come on board. We are energized by the momentum GLOBAL has built and look forward to seeing this important legislation pass this year.”

“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 Executive Director of the Down Syndrome Association of Central Oklahoma Sarah Soell. “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. We were so pleased that our representative Ephraim Bowling was able to join GLOBAL in meeting with Members of Congress and share his hope for a brighter future for his sister, Joy.”

GLOBAL had advocated for a trans-National Institutes of Health (NIH) Down syndrome research program since its inception in 2009. In 2017, three GLOBAL senior leaders, including board member, Frank Stephens, testified at the landmark House Appropriations Subcommittee on Labor, Health, and Human Services, Education, and Related Agencies Hearing entitled “Down Syndrome: Update on the State of the Science and Potential for Discoveries Across Other Major Diseases.” Frank Stephens’ 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 (Investigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) Project.

Since the INCLUDE Project was established as part of the FY2018 Labor-HHS appropriations bill, the program has funded nearly 500 unique awards from 21 of the 27 NIH institutes. At least eleven 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 is funding fifteen promising clinical trials with possible immediate or short-term impact for people with Down syndrome.

DeOndra Dixon INCLUDE Project Act Cosponsors (S. 1838; H.R. 3491)

1. Senator John Hickenlooper (D-CO)*
2. Senator Jerry Moran (R-KS)*
3. Senator Cory Booker (D-NJ)
4. Senator Markwayne Mullin (R-OK)
5. Senator Michael Bennet (D-CO)
6. Senator Alex Padilla (D-CA)
7. Senator Shelley Moore Capito (R-WV)
8. Senator Christopher Coon (D-DE)
9. Senator Chris Van Hollen (D-MD)
10. Representative Diana DeGette (D-CO-01)*
11. Representative Richard Hudson (R-NC-09)*
12. Representative Tom Cole (R-OK-04)
13. Representative Rosa DeLauro (D-CT-03)
14. Representative Pete Stauber (R-MN-08)
15. Representative Paul Tonko (D-NY-20)
16. Representative Brittany Pettersen (D-CO-07)
17. Representative Angie Craig (D-MN-02)
18. Representative Jason Crow (D-CO-06)
19. Representative Joe Neguse (D-CO-02)
20. Representative Mark Pocan (D-WI-02)
21. Representative Ann Wagner (R-MO-02)
22. Representative Deborah Ross (D-NC-02)
23. Representative David Kustoff (R-TN-8)
24. Delegate Eleanor Holmes Norton (D-DC)

The GLOBAL DC Fly-In concluded with a reception highlighting the achievements of the delegation and celebrating future advocacy efforts with dinner and dancing.

Please contact your U.S. Representatives and Senators and urge them to cosponsor the DeOndra Dixon INCLUDE Project Act.

GLOBAL Affiliate, the Crnic Institute for Down Syndrome, has five clinical trials specifically for patients with Down syndrome: Two in Alzheimer’s and Down Syndrome, one in Down Syndrome Regression Disorder, and two in autoimmunity and inflammation.

To read about the impactful research that the INCLUDE Project has funded visit the NIH Down Syndrome Coordinating Center Website.

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 35 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:
Anca Elena Call, acall@globaldownsyndrome.org, C: (720) 320-3832

Alex Lee, alee@globaldownsyndrome.org, C: (720) 382-8451

Crnic Institute findings published in Cell Reports highlight understudied abnormal liver function in people with Down syndrome and possible dietary interventions

Researchers at the University of Colorado Anschutz Linda Crnic Institute for Down Syndrome (Crnic Institute) have uncovered compelling evidence that individuals with Down syndrome experience significant alterations in liver metabolism, including elevated levels of bile acids in the bloodstream and other biomarkers of liver dysfunction. The study, published in Cell Reports, suggests that these changes may be modifiable through diet, providing hope for improved health outcomes.

Results Identify Unique Liver Dysfunction in Down Syndrome

The liver is a dynamic and vital organ that removes toxins from blood, produces bile for fat digestion, metabolizes nutrients, and makes proteins for blood clotting, making it essential for detoxification, metabolism and immunity. Using multiomic analysis of plasma samples from more than 400 research participants in the Human Trisome Project, a large cohort study of the population with Down syndrome run by the Crnic Institute, the team identified consistent elevations in bile acids across the lifespan, independent of body mass index (BMI) or co-occurring conditions. Bile acids are molecules made from cholesterol in the liver that are crucial for digesting fats and fat-soluble vitamins in the small intestine, while also acting as signaling molecules that can regulate metabolism and inflammation.

The study also demonstrated that hepatocytes, the most abundant cells in the liver, derived from induced pluripotent stem cells donated by individuals with Down syndrome exhibit intrinsic metabolic dysfunction, including altered bile acid production and abnormally high fat storage. These cellular findings reinforce the systemic observations in research participants and point to a genetic basis for liver abnormalities in Down syndrome.

To better understand the mechanisms underlying liver dysfunction in Down syndrome, Crnic Institute researchers turned to the Dp16 mouse model, which mirrors many genetic features of Down syndrome. These mice exhibited striking abnormalities in the liver, including inflammation, fibrosis, and a ductular reaction, a phenomenon involving bile duct proliferation and remodeling of blood vessels. Metabolomic analysis revealed elevated bile acids like those observed in people with Down syndrome, and gene expression profiling uncovered widespread disruptions in metabolic and inflammatory signaling pathways. Notably, dietary fat intake profoundly influenced these outcomes: mice fed a high-fat diet developed steatosis, a form of liver disease, and exacerbated liver injury, while a low-fat diet mitigated these effects.

“Our data show that Down syndrome profoundly impacts hepatic metabolism,” says Kelly Sullivan, PhD, senior author and associate professor of Pediatrics at the University of Colorado Anschutz. “Importantly, we found that dietary fat intake can exacerbate or ameliorate these effects in the mouse models, suggesting that nutrition could play a key role in managing liver health in this population.”

“The study demonstrates the importance of combining human research studies with cellular and animal models to drive scientific discovery,” says Lauren Dunn, PhD, lead author of the study. “These findings open the door to practical interventions, where something as simple as dietary modification could significantly improve liver and overall health.”

A Healthy Liver is Vital to Living Longer with Down Syndrome

Liver disease affects up to 100 million adults in the U.S., yet its prevalence in Down syndrome has been poorly understood. This research provides comprehensive evidence of liver dysfunction in Down syndrome and underscores the importance of early monitoring and dietary strategies to reduce risk.

“The liver is an incredibly important organ for many biological functions across the lifespan, even mild liver dysfunction can have broad impacts on human health,” says Joaquín Espinosa, PhD, executive director of the Crnic Institute and professor of Pharmacology. “The fact that liver dysfunction had not been well documented in this population until now highlights the value of transformative research funding through the National Institutes of Health INCLUDE Project and the Global Down Syndrome Foundation.”

“GLOBAL is so grateful to our donors and research participants who make this kind of breakthrough research possible,” says Michelle Sie Whitten, president & CEO of the Global Down Syndrome Foundation (GLOBAL).  “Our dedicated scientists understand the importance of a healthy liver and related functions. With additional research in this area, we hope that more detailed information on diet and other treatments will help my 22-year-old daughter and millions of others with Down syndrome to live longer, healthier lives.”

The research team plans to explore clinical interventions, including low-fat diets and lifestyle modifications, to determine their impact on liver health in individuals with Down syndrome.

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 established the first Down syndrome research institute and supports over 400 scientists and over 2,700 patients with Down syndrome from 35 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 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, and LinkedIn.

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.