Archive for 2023

Sleep Apnea, Eye/Vision Care, Solid Tumors, Leukemia, and Physical Therapy Additions are Planned for Second Edition in 2027


DENVER –November 30, 2023

Today, Global Down Syndrome Foundation announced the roster of authors for the second edition of the first evidence-based GLOBAL Medical Care Guidelines for Adults with Down Syndrome (“GLOBAL Adult Guideline”). The first edition was published in JAMA, the Journal of American Medical Association, in October 2020, and is comprised of free checklists/toolkits, a family-friendly version, and translations into Spanish and Japanese. The fourteen authors include Down syndrome experts and the directors of the largest adult Down syndrome clinics in the U.S. Global Down Syndrome Foundation (“GLOBAL”) has also recruited an additional twenty-one volunteer committee members representing additional Down syndrome medical expertise.

The GLOBAL Adult Guideline Second Edition will provide new and important clinician guidance in the areas of sleep apnea, eye/vision care, solid tumors, leukemia, and physical therapy and fitness. The nine medical topics covered in the first edition will also be updated: behavior, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease. GLOBAL, along with an impressive International Advisory Committee, is working to ensure that a family-friendly version, checklists/toolkits, and multiple language versions will be published shortly thereafter.

Atlantoaxial Instability spread

“We are so pleased to be able to expand this important resource for our adults with Down syndrome,” says Bryn Gelaro, Senior Director of Research & Medical Care at GLOBAL. “The work can be very difficult given the lack of historical research but creating a 5-6 year cycle where we can dependably update new editions of this guideline is so rewarding. It is also an honor to be working with our brilliant authors and medical committee members.”

The Authors in Alphabetical Order:

  1. Peter Bulova, MD – Professor of Medicine; Medical Director, University of Pittsburgh Adult Down Syndrome Center; Co-Director, Magee Center for Women with Disabilities, University of Pittsburgh Department of Medicine, Pittsburgh, PA
  2. George Capone, MD – Associate Professor of Pediatrics; Director, Down Syndrome Clinic and Research Center, Medical Director, Pediatric Feeding Disorders Program, Kennedy Krieger Institute, Baltimore, MD
  3. Brian Chicoine, MD – Medical Director and Co-Founder, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, IL
  4. Joaquín Espinosa, PhD – Executive Director, Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus, Aurora, CO
  5. Terry Harville, MD, PhD, D(ABMLI), D(ABHI) – Professor of Internal Medicine, in the Division of Hematology/Oncology; Medical Director, HLA and Histocompatibility Laboratory; Medical Director, Immunogenetics and Transplantation Laboratory, University of Arkansas for Medical Sciences, Little Rock, AR
  6. Christine Heubi, MD – Surgical Director, Complex Obstructive Sleep Apnea Center; Assistant Professor, UC Department of Otolaryngology, Head and Neck Surgery, University of Cincinnati, Cincinnati, OH
  7. Barry Martin, MD – Associate Professor of General Internal Medicine, University of Colorado School of Medicine; Medical Director, Adult Down Syndrome Clinic at Denver Health, Denver, CO
  8. Emily McCourt, MD – Chief of Pediatric Ophthalmology; Vice Chair of Pediatric Ophthalmology; The Ponzio Family Chair for Pediatric Ophthalmology, Children’s Hospital Colorado, Aurora, CO
  9. Lina Patel, PsyD – Associate Professor, Department of Psychiatry; Director of the Down Syndrome Behavioral Health Collaborative, University of Colorado School of Medicine, Anschutz Medical Campus, Aurora, CO
  10. Moya Peterson, PhD, ARNP – Clinical Professor, School of Nursing; Co-founder and Medical Director, Adults with Down Syndrome Specialty Clinic, University of Kansas Medical Center,
  11. Michael Puente Jr, MD – Assistant Professor, Ophthalmology, School of Medicine, University of Colorado Anschutz Medical Campus; Director of Medical Student Education, Aurora, CO
  12. Mike Rafii, MD, PhD – Professor of Clinical Neurology; Medical Director of the Alzheimer’s Therapeutic Research Institute; Alzheimer’s Clinical Trials Consortium – Down Syndrome Principal Investigator, Keck School of Medicine of University of Southern California, Los Angeles, CA
  13. Carl Tyler, MD – Professor of Family and Community Medicine at Cleveland Clinic Lerner College of Medicine, Case Western Reserve University School of Medicine; Executive Board, American Academy of Developmental Medicine and Dentistry, Cleveland, OH
  14. Anna Marie White, MD, FACP, FAAP – Clinical Assistant Professor of Medicine and Pediatrics; Medical Provider, Down Syndrome Center Western PA, Pittsburgh, PA

GLOBAL has worked with Congress and the National Institutes of Health (NIH) since 2006 advocating for a trans-NIH Down syndrome research funding program and for increased funding. In December of 2010, GLOBAL and the NIH co-organized the first Down syndrome research conference with a focus on registries and biobanks. One important result was the establishment of DS-Connect®: The Down Syndrome Registry at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

GLOBAL has published both an 80-page guideline for medical professionals and a family-friendly version in Spanish in collaboration with El Centro de la Universidad Católica de Síndrome de Down in Chile and in Japanese in collaboration with the Japan Down Syndrome Association.

To learn more about the GLOBAL Adult Guideline and download your copy today, visit 

To learn more about Global Down Syndrome Foundation, visit 


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About Global Down Syndrome Foundation 

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

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


While content of this press release and the GLOBAL Guideline was developed by GLOBAL and the GLOBAL Guideline Authors, we are unable and do not intend to provide medical advice or legal advice to individuals. Please contact your health care provider(s) or legal advisor(s) for questions specific to your individual health history or care.  

Press Contact     

Anca Call:, 720-320-3832 




Rob Aderholt photo

Bi-Partisan Support for Down Syndrome!​

Government Profiles from the award-winning ​Down Syndrome World magazine​.

Learn more about our magazine, webinars​ and GLOBAL Membership benefits

Common-Sense Solutions for Alabama

In his 14th term representing Alabama’s fourth congressional district, Robert Aderholt is an advocate for fiscal responsibility, truth in budgeting and federal government operating within its means.Robert Aderholt is a strong supporter of his community, district and the state of Alabama. He believes the federal government serves an essential role in assisting state and local governments with economic development.

From his position on the powerful House Appropriations Committee, Rep. Aderholt supports job creation, strong immigration standards and robust national security. He is the Chairman of the Appropriations Subcommittee on Labor, Health & Human Services and Education, which is responsible for the largest non-defense portion of the entire federal budget. He is also a member of the Commerce, Justice and Science Subcommittee and the Defense Subcommittee.

Rep. Aderholt also chairs the Values Action Team, a Congressional Member Organization in the House of Representatives focused on promoting families, communities and religious freedoms.

Additionally, Rep. Aderholt is a member of the Commission on Security and Cooperation in Europe. Commonly known as the Helenski Commission, the group was founded in 1976 and is comprised of 56 countries around the world working together to monitor human rights in Europe and Central Asia.

Rep. Aderholt is a member of the U.S. Congressional Down Syndrome Caucus and continues to support the disabled community through his efforts to sustain and prolong the viability of our Social Security system.


Driving the Nation Forward

Tammy Baldwin was elected Wisconsin’s first female congressional representative in 1998 and went on to become the state’s first female senator and the country’s first openly gay senator in 2012.

Senator Baldwin has dedicated her career in public 

service to fighting for fairness, equality and economic opportunity for all. She was introduced to the inequities in our healthcare system at 9 years old when she was diagnosed with a serious illness and her grandparents, who were also her guardians, were unable to list her on their insurance. Baldwin’s grandparents were forced to pay out of pocket for her treatment and were subsequently unable to purchase any health insurance for her because she was labeled with a preexisting condition.  

Years later, Baldwin went on to champion the Affordable Care Act, which protects Americans from being denied health insurance coverage because of a preexisting condition.

In 2021, Baldwin joined colleagues to introduce the Better Care for Better Jobs Act, which expanded access to home- and community-based services for seniors, people with disabilities and injured workers, while increasing pay and improving benefits for caregivers.

Baldwin is committed to working across party lines to strengthen the pillars of economic security for working families: investments in education and workforce readiness, a strong “Made in Wisconsin” manufacturing and agriculture economy, and quality healthcare for all Americans.

Senator Baldwin serves on the Senate Committee on Health, Education, Labor and Pensions, the Senate Committee on Commerce, Science, and Transportation and the Senate Appropriations Committee. She is also Chair of the Senate Appropriations Subcommittee on Agriculture, Rural Development, Food and Drug Administration and Related Agencies.

Kevin McKidd & Danielle Savre Make Red Carpet Debut

November 22nd, 2023 by Cole Wilkes

The Star-Studded Be Beautiful Be Yourself Fashion Show

November 22nd, 2023 by Cole Wilkes