Archive for November, 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 fifteen 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 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.

“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, Pittsburg, 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. Vishal Jhanji, MD – Professor of Ophthalmology at the University of Pittsburgh School of Medicine, University of Pittsburg Department of Ophthalmology Pittsburgh, PA
8. 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
9. 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
10. 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
11. 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,
12. Michael Puente Jr, MD – Assistant Professor, Ophthalmology, School of Medicine, University of Colorado Anschutz Medical Campus; Director of Medical Student Education, Aurora, CO
13. 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
14. 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
15. Anna Marie White, MD, FACP, FAAP – Clinical Assistant Professor of Medicine and Pediatrics; Medical Director, Street Medicine Pitt, University of Pittsburgh Medical Center, 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 www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

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About Global Down Syndrome Foundation

The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL 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 globaldownsyndrome.org and follow us on social media (Facebook & Twitter: @GDSFoundation, Instagram: @globaldownsyndrome).

IMPORTANT NOTICE

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: acall@globaldownsyndrome.org, 720-320-3832

ROBERT ADERHOLT (R-AL)

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