Archive for the ‘Blog’ 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

For the fifth consecutive year, the Down Syndrome Alliance of the Midlands–GLOBAL joint “Building the Future” gala in Omaha, Nebraska, was a HUGE success – raising needed funds for amazing local programs and life changing research. Guests were thrilled to hear from world-renowned behavior expert, Dr. Lina Patel, of GLOBAL’s affiliate, Linda Crnic Institute, who shared that funds raised at the event change lives locally – through programs like the Alliance’s Down Syndrome Education Series, adaptive swim, and cooking programs, and more – as well as nationally and internationally.

Dr. Patel shared how every dollar given at the gala has a tangible benefit when it comes to elongating life and dramatically improving health outcomes for people with Down syndrome with transformative, life-saving studies of immune disorders, Alzheimer’s disease, hearing, metabolism, and more.

Dr. Patel provided updates on Crnic’s groundbreaking clinical trial of JAK-inhibitors in adults with Down syndrome which showed the following remarkable results:

• 86% of trial participants showed improvement in atopic dermatitis     
• 78% showed improvement in alopecia areata                                   
• 75% showed improvements in psoriasis
• 58% showed improvements in hidradenitis suppurativa

Remarkably, 2 patients with Down Syndrome Regression Disorder saw their symptoms reversed, leading to an NIH-funded study of three potential treatments for the Disorder. Trial recruitment for that study is closed, and data analysis began in May.

Dr. Patel shared that a trial of the JAK-inhibitor in people with Down syndrome ages 6-22, will launch soon at Crnic. The purpose of the study is to understand the safety profile and efficacy of early JAK inhibition in individuals with Down syndrome, with the goal of improved outcomes and neurodevelopment. The Crnic Institute also has current studies on early learning and biology, hearing, chronic constipation, early health and motor abilities, communication and play in those with Down syndrome, she noted.

In addition to learning about research, Dr. Patel encouraged families to get involved by participating in Crnic’s Human Trisome Project and by joining DS-Connect®, the National Institutes of Health Down Syndrome Registry.

Finally, Dr. Patel thanked the Down Syndrome Alliance of the Midlands, under the direction of Executive Director Elizabeth Draney, and those in attendance for their generous giving. Over the last 5 years, the gala has raised $50,000 to help update and expand the GLOBAL Medical Care Guidelines for Adults with Down Syndrome. In total, this year’s gala raised over $185,000 to support programs for those with Down syndrome in greater Omaha, as well as the Adult Guidelines. GLOBAL is proud to partner with the Alliance on this amazing evening of fun, learning, and investment in the future of our community!

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.

Dr. Nicole Baumer, Director of GLOBAL Affiliate the Anna and John J. Sie Center for Down Syndrome, recently spoke at the annual Emory Down Syndrome Research & Caregiver Symposium, discussing common neurodevelopmental and behavioral characteristics, skills, and abilities in Down syndrome, and how to apply neurodevelopmental knowledge to address behavior challenges and plan effective interventions.

While acknowledging common behavioral challenges that often occur in people with Down syndrome, Dr. Baumer began her presentation focusing on the positive characteristics associated with the diagnosis, noting that using a child’s strengths is key when seeking strategies to help address challenges or needs. Dr. Baumer encouraged attendees to try to understand the motivation driving concerning behaviors, including communication, social attention, avoiding unwanted tasks/situations, and sensory stimulation.

Dr. Baumer outlined specific strategies that may help address behaviors, including positive reinforcement and redirection. Importantly, she noted that while punishment may decrease the likelihood of a behavior, it is not effective for long-term behavior change and can strain relationships.

Along with being Director of the Sie Center, Dr. Baumer is also an associate professor of neurology at the University of Colorado School of Medicine and the GLOBAL Endowed Chair for Down Syndrome at Children’s Hospital Colorado. As such, she underscored the importance of looking for potential medical causes of challenging behaviors, such as pain (ears, dental, musculoskeletal, headache, menstrual), infection, sleep disorders (including obstructive sleep apnea), nutrition, hearing or vision impairment, celiac disease, thyroid issues, and gastrointestinal problems (constipation, reflux, abdominal pain). In addition to physical health problems, Dr. Baumer also shared the importance  of considering co-occurring neurodevelopmental, behavioral, and mental health conditions, such as autism, ADHD, depression, anxiety, and OCD. She added that it is important to avoid diagnostic overshadowing, where behavior issues are just attributed to the person having Down syndrome. In these cases, Dr. Baumer stressed that children and adolescents with Down syndrome should receive the same specialized intervention and care as children with these conditions who do not have Down syndrome.

Dr. Baumer encouraged parents who have concerns regarding their child’s behavior to seek comprehensive evaluation, including a medical/clinical evaluation, a psychosocial assessment of stressors, an assessment of skills, and a neuropsychological assessment. She concluded her talk with a discussion of evidence-based strategies, including behavioral interventions, environmental modifications and accommodations, and medications.

The Emory Symposium brought together nearly 150 family members and professionals dedicated to advancing care and improving lives. Other speakers included Keynote Speaker and self-advocate, Martha Haythorn; Dr. Melissa Parisi, Intellectual and Developmental Branch Chief of the Eunice Kennedy Shriver National Institute of Child Health and Human Development; Sheryl Arno and Tamara Pursley, Executive Directors of GLOBAL Organization Members Down Syndrome Association of Atlanta and Adult Disability Medical Healthcare, respectively; and Dr. Angela Rachubinski, Director of the Clinical and Translational Sciences Program at the Linda Crnic Institute for Down Syndrome.

The annual Emory Down Syndrome Research & Caregiver Symposium is a program of the Emory Down Syndrome Center, led by Dr. Tracie Rosser. The Center is part of the Emory University School of Medicine Department of Human Genetics.

Nearly eight years ago, Elly Kitaly founded Chadron’s Hope Foundation after the birth of her son, Chadron. What began as a mother searching for information in a system with few resources has grown into a community-based organization providing early intervention services, psychosocial and economic support for mothers, and national awareness around Down syndrome in Tanzania. In this conversation, Elly shares her journey, the realities families face, and her vision for lasting change.

GLOBAL: Elly, tell us a little bit about yourself and how you got involved with Chadron’s Hope Foundation. What led you to where it is today?

ELLY: My name is Elly. I’m a mother of two boys, Chadron and Darren. My background is in telecom engineering, but I had to stop working to support Chadron because there is not so much support for people with Down syndrome in Tanzania.

When the doctor told me, “Congratulations, you have a baby boy with Down syndrome,” I did not know what that meant. There was no pamphlet, no counseling, no explanation. The hospital had no network access, so I could not even search online. I remember leaving that area just so I could Google what Down syndrome was.

That moment began my journey. I had education and access to information once I found it, and still I struggled. I kept thinking about mothers who did not have those same resources. If it was this hard for me, what about someone raising a child alone, without information, without income, without support? That is why we formed Chadron’s Hope Foundation, with hope to improve the lives of people with Down syndrome and other neurodevelopmental disabilities.

 GLOBAL: Prior to Chadron’s birth, had you ever met or known anyone with Down syndrome?

ELLY: I had met someone when I was young, but I didn’t know it was Down syndrome. There was a young girl in town who had some condition, but we didn’t understand what it was. So when Chadron was born, everything was new to me. I was lucky that the doctors mentioned Down syndrome. Some families never even get told clearly what the condition is. But still, I didn’t understand what it meant. I had to teach myself.

Now when I speak in Tanzania about mosaic, translocation, trisomy 21, sometimes people think I’m a doctor. But I’m not. I’m an engineer. I just had to learn.

GLOBAL: You mentioned that many mothers are left to raise their children alone. Is it common in Tanzania for partners to leave after the diagnosis?

ELLY: Yes, it is common. Stigma is still strong in many communities. Some people believe disability is a curse or witchcraft. There is also economic pressure. When there is no formal support system, the responsibility can feel overwhelming. But mothers do not leave. They stay. One mother in our community shared that after her child was born with Down syndrome, the father left. There were days she did not have money for food. When you listen to her story, you understand the magnitude of the problem. It is not only emotional. It is economic. It is social. It is systemic. We are seeing change as awareness grows, but there is still a long way to go.

GLOBAL: How did Chadron’s Hope Foundation begin and how has it evolved?

ELLY: We are going to be legally registered for almost eight years. It started on Chadron’s third birthday. We asked our community and friends, instead of bringing birthday gifts, can they donate to support the registration and formalization of CHF. First, we started with awareness. We did media tours on local TV, radio, social media, even BBC World Service. Then we started supporting mothers directly. We gave seminars for mothers to help them accept their children and to teach simple exercises they could do at home because there are not many professionals like occupational therapists or speech therapists. As we continued, we realized that even if you teach all these wonderful things, if a mother cannot afford food or medical bills, we are not creating a sustainable model. That is when we formed a coalition called Mothers Raising Champions. We collectively save small amounts of money together and also ask the community to chip in. We support mothers economically, and we also teach financial management. During a time of national unrest, when families could not go out to work and some lost their business capital, we were able to support them with food and restart capital because of that coalition savings. That showed us how important economic empowerment is.

GLOBAL: What are your main programs today?

ELLY: We have Imara Therapy Center, where we provide early intervention services. Right now, we offer occupational therapy and home-based therapy because many parents are not able to bring their children due to financial hardship or lack of caregivers. We also have Mama Muema, which focuses on psychosocial support, counseling, and economic empowerment for mothers. That community is built by mothers and led by mothers. We have seven mothers who are leaders in that group. We continue to create awareness through media and by partnering with local leaders and hospitals. We believe that the best way to reach new mothers is by working with hospitals and social workers so they can refer families to us early.

GLOBAL: You’ve spoken about sustainability. What does that mean for you?

ELLY: We are positively making impact here in Tanzania. But the organization has grown beyond our capacity as friends and family supporting it.

Right now, we have six staff members. Four are paid full-time and two are volunteers. The team includes an occupational therapist, caregivers, and a communications officer. We are still short on specialists like speech therapists and physiotherapists.

Some families contribute to services when they can, sometimes as little as one dollar per visit. That helps, but it does not fully cover the costs. I carry multiple roles. I oversee finance, communications, leadership, and partnerships. We have proven for years that we can deliver impact. Now we need to strengthen our capacity so the work is sustainable. Imara Therapy Center is also part of that vision. We are building it as an income-generating arm so we are not fully dependent on external donors. In Tanzania, we say, “Teach us to fish, not give us fish.” We want to build long-term stability here at home.

 GLOBAL: What are the biggest medical gaps you see in Tanzania?

ELLY: Many parents do not receive clear medical guidance after diagnosis. There is no standardized checklist widely distributed that explains what health screenings are needed from childhood through adulthood. If a parent has knowledge and resources, they may ask for certain tests. But many families do not even know what to request. We are exploring partnership with Muhimbili University of Health and Allied Sciences to assess medical gaps for people with Down syndrome in Tanzania. What services are available? What are families actually receiving? What equipment or diagnostic tools are missing?

We also believe partnership between doctors across countries is important. Health patterns and access can differ by region, and there is much to learn from each other. If we can localize global medical guidelines in a way that fits Tanzania’s system, that could be transformative.

GLOBAL: What would you like the GLOBAL community to understand about your work?

ELLY: First, I am deeply grateful for partnership and collaboration. Even sharing resources and knowledge makes a difference. Second, I want people to know that real impact is happening in Tanzania. We have built a growing community of mothers. Children are receiving therapy. Awareness is increasing. But we are still building systems from the ground up. What we need most now is support to build our capacity, especially for staff and operational stability, so the work does not rely only on volunteering. I truly believe that if we strengthen this foundation now, we can create lasting change in Tanzania.

GLOBAL: Any final thoughts?

ELLY: I hope that one day a mother in Tanzania who gives birth to a child with Down syndrome will receive clear information, support, and dignity from the beginning. I also hope for children growing up with access to therapy, education, and eventually adulthood options like individualized assisted living, which does not yet exist here. We are working toward that environment.

I am grateful for this opportunity, and I look forward to what we can achieve together.

Learn More

Website: Chadron’s Hope Foundation | Our Programs

Instagram: Chadron’s Hope Foundation (@chadronfoundation)

Facebook: Chadron Foundation | Facebook

In 2019, the BBC produced a documentary about Elly and Chadron’s journey. To learn more, read the article below:

• ‘There is no word for Down’s syndrome in my language’ (English)
• ‘There is no word for Down’s syndrome in my language’ (Swahili)

Swahili Translation of Medical Guidelines

• GLOBAL Adult Guideline for Adults with Down Syndrome 
• AAP Health Supervision Guidelines for Children and Adolescents with Down Syndrome
• Prenatal & Newborn Pamphlet (PNP)

Earlier this month, the National Down Syndrome Congress announced that Dr. Nicole Baumer will receive its prestigious Pueschel/Tjossem Research Award at its convention in July in Orlando. Dr. Baumer is the Director of GLOBAL’s Affiliate, the Anna & John J. Sie Center for Down Syndrome.

The award recognizes, “research that has contributed to more excellent knowledge and understanding of Down syndrome and has improved the lives of people with Down syndrome and their families.” The award can be given to an individual researcher, a program, or a research institute. Dr. Baumer has led research efforts on a variety of fronts, including a National Institutes of Health (NIH) INCLUDE Project grant examining early developmental and medical profiles of Down syndrome, and another investigating mobility interventions for infants with Down syndrome.

In addition to her own research grants, Dr. Baumer invests in the development of research infrastructure and nurtures the skills of those around her. She developed and awarded the first Sie Center Pilot Research Grant to encourage other healthcare providers to become more involved in Down syndrome research. Dr. Baumer is known for her collaborative spirit, working on research projects with Colorado State University, Boston Children’s Hospital, and the Linda Crnic Institute for Down Syndrome, among others. Additionally, she recently served as president of the Down Syndrome Medical Interest Group – USA. Notably, Dr. Baumer is both a clinician and a researcher, which is a highly valued, but uncommon combination.

The award is named in honor of two giants in Down syndrome research, Dr. Sigfried Pueschel, a renowned pediatric researcher and clinician who authored hundreds of scientific articles and medical texts about Down syndrome, and Dr. Theodore Tjossem, a retired NIH psychologist who was chief of the Developmental Disabilities Research Centers branch at the National Institute of Child Health and Human Development (NIH) for 22 years. Past recipients include Drs. Brian Chicoine, Dennis McGuire, George Capone, Ed McCabe, Anna Esbensen, and the Beach Center on Disability.

Dr. Baumer will be presented with the award at a special ceremony at the 54^th annual NDSC Convention in Orlando, Florida. Additional awardees for 2026 include GLOBAL Membership Advisory Board Member Amy Van Bergen (Sig Pueschel NDSC Service Award), Paige Faucheux (Christian Pueschel Memorial Self-Advocate Award), Majo Paiz (Media Award), Roxane Romanick (Laura Lee Advocacy Award), Dr. Teresa Aguilasocho-Montoya (International Service Award), Raising Robust Readers (Education Award), and Orlando Health: We Build (Employer of the Year Award).  GLOBAL Congratulates all awardees!

Arwen Jackson, a speech language pathologist at the Sie Center at Children’s Hospital Colorado (CHCO), along with her colleagues Jennifer Maybee (speech language pathologist) and Jenna Mathews (occupational therapist), were awarded the inaugural Sie Center Pilot Research Grant. The research team will utilize the grant to validate a screening tool that aims to better identify children at risk of developing pediatric feeding disorders during the transitional feeding stage. This period typically occurs in toddlerhood when complementary foods are introduced. It is also one of the developmental stages where children with Down syndrome often face significant feeding challenges and require targeted interventions. Children with Down syndrome are at a higher risk of experiencing pediatric feeding disorders than their peers without Down syndrome. These challenges include differences in chewing and swallowing, mealtime behaviors, and difficulty with intake or nutrition.

This study holds exciting promise for both research and clinical practice. Better understanding feeding development in children with Down syndrome has the potential to lead to earlier interventions and more innovative treatment plans. A screening tool targeted at the transitional feeding stage of development has never been validated for use in children with Down syndrome. Having a valid screening tool would enable future researchers to better design studies with clearly measurable outcomes related to feeding and swallowing in Down syndrome. The study is expected to run for a year.

“We are deeply grateful for this grant, which empowers us to advance research that can meaningfully improve quality of life and access to essential resources for young children with Down syndrome,” said Jackson. “Through this support, we aim to bridge research and practice, translating scientific knowledge into tangible benefits for the community we serve.”

This study also encourages important interdisciplinary research collaboration among specialists in Down syndrome, feeding development, swallowing, and food science. Notably, Dr. Carolyn Ross, a food scientist who has already conducted research on food texture acceptance in individuals with Down syndrome, is involved.

While clinicians and medical providers in Down syndrome clinics often have the most expertise in caring for people with Down syndrome, their ability to amplify their impact through research participation can by limited by a lack of time and/or funding. The Sie Center Pilot Grant hopes to address some of these issues by providing recipients with seed funding up to $50K and mentorship through the clinical research process.

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.