Professor of Medicine, University of Pittsburgh Medical Center

Peter Bulova a suivi une formation de premier cycle à l'université de Brown. Il a effectué son internat et son internat en chef et a obtenu son diplôme de médecine à l'université de Pittsburgh. Il est professeur de médecine interne générale et enseigne aux étudiants en médecine, aux résidents et aux boursiers de l'université de Pittsburgh. Le Dr Bulova participe actuellement à des recherches sur la maladie d'Alzheimer chez les adultes atteints du syndrome de Down, siège au NIH National Down Syndrome Registry Data Access Review Committee et est un réviseur ad hoc pour plusieurs revues, notamment le Journal of Intellectual Disability Research et l'American Journal on Intellectual and Developmental Disabilities. Le Dr Bulova est également membre du conseil d'administration du Down Syndrome Medical Interest Group et intervient au niveau national sur la prise en charge des adultes atteints du syndrome de Down.

Director, Down Syndrome Clinic & Research Center, Kennedy Krieger Institute, Associate Professor of Pediatrics, Johns Hopkins School of Medicine

Depuis 1990, le Dr Capone travaille au Kennedy Krieger Institute, où il est actuellement directeur de la clinique et du centre de recherche sur le syndrome de Down. Il s'intéresse à un large éventail de sujets concernant les personnes atteintes du syndrome de Down, notamment les soins de santé, le développement et le comportement neurologique, la santé mentale et les essais de médicaments pour le sommeil chez les enfants et les adultes. Le Dr Capone vit à Towson, dans le Maryland, avec sa femme Mary et son fils Daniel.

Medical Director, Advocate Medical Group Adult Down Syndrome Center

Brian Chicoine, M.D. is the co-founder and Medical Director of the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, Illinois. The Center has served over 6000 adolescents and adults with Down syndrome since its inception in 1992. Dr. Chicoine graduated from Loyola University of Chicago Stritch School of Medicine. He completed his Family Medicine residency at Lutheran General Hospital where he is now a faculty member. He has published many articles regarding health of people with Down syndrome. He has co-authored two books “Mental Wellness of Adults with Down Syndrome,” and “The Guide to Good Health for Teens and Adults with Down Syndrome” published by Woodbine House Publishing.

Professor of Pathology and Laboratory Services, and Internal Medicine, Department of Pathology and Laboratory Services, and Department of Internal Medicine, Division of Hematology, University of Arkansas for Medical Sciences

Terry Harville earned a PhD in Biochemistry and Molecular Biology, before earning his MD at the University of Florida. He completed a residency in Pediatrics and Fellowship in Pediatric Immunology, Rheumatology, and Transplantation Biology; also at the University of Florida. Dr. Harville joined the faculty of Duke University, where he pioneered hematopoietic transplantation in patients with rare forms of Combined Immunodeficiencies. Subsequently, he joined the faculty of Arkansas Children’s Hospital and the University of Arkansas for Medical Sciences, as Director of Pediatric Rheumatology and Immunodeficiencies. He was asked to take over the Directorship of the Transplantation Laboratories in order to provide better transplantation services in the state of Arkansas. Dr. Harville has more than 160 published abstracts, book chapters, and peer-reviewed manuscripts. Autism Spectrum of Disorders and other diseases of Neuro-atypicality, including Down syndrome, have been amongst his research and clinical care emphases. He also is considered an expert in the diagnosis of immunodeficiency disorders and autoimmune disorders, including celiac disease.

Associate Professor of Clinical Practice, Division of General Internal Medicine, University of Colorado School of Medicine, Anschutz Medical Center

Barry Martin est professeur adjoint de médecine interne générale à la faculté de médecine de l'université du Colorado, où il reçoit des patients pour des soins primaires et des consultations. Il est certifié en médecine familiale et a plus de 20 ans d'expérience dans la fourniture de soins de santé primaires aux adultes handicapés, en particulier aux personnes souffrant de troubles du développement et du syndrome de Down. Il a été directeur médical de l'ancienne Denver Adult Down Syndrome Clinic. Il est actuellement directeur médical de la clinique pilote de Denver Health et de GLOBAL pour les adultes atteints du syndrome de Down. Le Dr Martin est membre du National Down Syndrome Congress et du Down Syndrome Medical Interest Group.

Behavioral health expert in Down syndrome; former Director of Psychological Services, Advocate Medical Group Adult Down Syndrome Center

Le Dr McGuire est un spécialiste de la santé comportementale des personnes atteintes du syndrome de Down. Il possède plus de 30 ans d'expérience dans les domaines de la santé mentale et des troubles du développement. Il est l'ancien directeur des services psychosociaux de l'Adult Down Syndrome Center à Chicago, dans l'Illinois. Il a contribué à la création de ce centre, qui accueille chaque année plus de 4 000 patients. Le Dr McGuire donne des conférences lors d'événements organisés dans le monde entier et est le co-auteur de deux ouvrages importants : Mental Wellness of Adults with Down Syndrome et The Guide to Good Health for Teens and Adults with Down Syndrome (2011), tous deux publiés par Woodbine House. Il a reçu de nombreux prix, notamment le prix de la recherche Theodore D. Tjossem du National Down Syndrome Congress en 2003 et le prix scientifique de la Journée mondiale du syndrome de Down en 2010. Le docteur McGuire continue de recevoir des couples, des familles et des particuliers dans un cabinet privé de la région de Chicago. Le docteur McGuire est titulaire d'un doctorat de l'université de l'Illinois à Chicago et d'une maîtrise de l'université de Chicago.

Associate Professor, Rockefeller Chair in Clinical Genetics, University of Arkansas for Medical Sciences Kent McKelvey, MD, is an Associate Professor in Medical Genetics and Family Medicine at the University of Arkansas for Medical Sciences and is board-certified in both specialties. He serves as the Director of Adult and Cancer Genetics Services at UAMS and is the inaugural recipient of the Winthrop P. Rockefeller Chair in Clinical Genetics.

Dr. McKelvey leads a multidisciplinary clinic that provides comprehensive services for adolescents and adults with Down syndrome. He is interested in public health issues that take into account the growing number of people with genetic syndromes and the complex interplay of medical and social needs in this population across lifespan. Dr. McKelvey has published original research investigating the etiology of osteoporosis in individuals with Down syndrome and has worked as Principal Investigator on clinical trials involving cognitive aspects of Down syndrome. He is actively researching nutrition, autoimmunity and the role of inflammation as it relates to dementia. He is interested in biomarkers and genetic changes which predict the early onset of common diseases in Down syndrome and also have implications for treatment of disease in the general population.

*In loving memory of Dr. Kent McKelvey, who dedicated his life to caring for adults with Down syndrome. His leadership and belief in GLOBAL gave us the confidence to create this important guideline. We are forever grateful.

Clinical Professor, University of Kansas Medical Center, Schools of Nursing and Medicine

Moya Peterson est professeur de clinique au centre médical de l'université du Kansas, dans les écoles d'infirmières et de médecine, au sein du département de médecine familiale et communautaire. Elle a fondé et dirige la clinique spécialisée pour les adultes atteints du syndrome de Down. Elle enseigne également dans le cadre du programme d'études supérieures de l'école d'infirmières, et une grande partie de son enseignement porte sur les personnes handicapées et en particulier sur les adultes atteints du syndrome de Down. Le Dr Peterson a obtenu son doctorat en 2006, avec une thèse sur les adultes atteints du syndrome de Down et les préoccupations de leurs familles concernant les questions de santé à l'âge adulte. C'est cette thèse qui a été à l'origine de la création de la clinique lorsqu'elle a constaté qu'il n'existait pas de prestataires de soins de santé spécifiques pour les adultes atteints du syndrome de Down dans le Midwest.

Evidence-based Practice Center, ECRI Center for Clinical Excellence and Guidelines; Staff Neurologist, Division of Neurology, Michael J Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania

Professor, Family Medicine and Community Health, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University School of Medicine; Director of Developmental Disabilities – Practice-Based Research Network

Carl V. Tyler Jr. is a clinician-researcher and professor at the Cleveland Clinic. His life work has been devoted to improving the health and health care of persons with developmental disabilities through clinical care, research, and professional and community education. His clinical training in psychiatry, family medicine, and geriatric medicine provided a rich clinical foundation and framework to understand the difficulties and complexities in providing health care to this population. Following medical school and residency training, Dr. Tyler completed two academic fellowships at Case Western Reserve University; the first focused on aging and disability while the second was a 3-year NIH-sponsored fellowship in practice-based research design and methodology. Dr. Tyler is also the Director of the Developmental Disabilities-Practice-Based Research Network.

President & CEO, Global Down Syndrome Foundation

Michelle Sie Whitten is the Co-Founder, President & CEO of the Global Down Syndrome Foundation. GLOBAL is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. As a direct result of Michelle & GLOBAL’s impactful government advocacy, NIH budget for Down syndrome has gone from one of the least funded to quadrupling in the last four years. In addition, Michelle served as a co-author and architect of the 2020 GLOBAL Guideline as published in JAMA. She has been recognized for her dedication to improving the lives of people with Down syndrome over the past decade, including: 17 ICON Awards, Denver Business Journal's Most Admired CEO, 2 National Down Syndrome Congress President’s Awards, Arc Thrift Stores’ inaugural Distinguished Disability Leadership Award and NewsED Civil Rights Award.

Prior to her career in the non-profit sector, Michelle was a cable TV pioneer in East Asia working for Liberty Media Corporation and Starz Encore. For her work during that time, she received the 40 Under 40 Achievement Award, the Real Women: Outstanding Entrepreneur Award and the Women in Cable & Telecommunications Walk of Fame Award. Her academic career was focused on international security and diplomacy and she holds a Masters degree and business certificate from Harvard University. She graduated Magna Cum Laude with a Bachelors degree from Tufts University and studied Mandarin Chinese and Women Studies at Peking University. Michelle is married to Tom, a British curator of Chinese contemporary art and they have two children, Sophia, who happens to have Down syndrome and Patrick, who is typical.

Senior Director of Adult Initiatives and Special Projects, Global Down Syndrome Foundation

Bryn Gelaro joined the GLOBAL team in 2015 as a consultant and is currently the Senior Director of Adult Initiatives and Special Projects. She is a Licensed Social Worker with a background in behavioral health for adults with adults with Down syndrome. Her work includes furthering GLOBAL’s adult care initiatives, serving as an executive committee member and co-author of GLOBAL’s Medical Care Guidelines for Adults with Down syndrome, and managing the development and operations of GLOBAL’s efforts to open a World Class Medical Clinic for adults with Down syndrome. In addition, her role oversees many of GLOBAL’s exciting international projects, including work with Albania, Uganda, and Iceland. Bryn has spoken to parents, educators, and medical professionals at conferences across the nation, including the National Down Syndrome Congress, the Down Syndrome Medical Interest Group, and the Down Syndrome Affiliates in Action. She coauthored research on Down syndrome in Uganda and was a contributor to the Prenatal Testing and Information about Down Syndrome Pamphlet (2nd Ed). Bryn earned her Bachelors of Science in Psychology from the Pennsylvania State University in 2012 and holds a Masters in social work from the University of Chicago’s School of Social Service and Administration in 2015. She completed her Master’s graduate field training at the Adult Down Syndrome Clinic in Chicago, where she facilitated social skills groups, completed assessments, conducted therapy, and occasionally tried to keep up in Zumba class with teens and adults with Down syndrome.

Former Research Coordinator for Developmental Disabilities – Practice-Based Research Network

Michael Wells, BS, was the Research Coordinator for the Developmental Disabilities - Practice-Based Research Network (DD-PBRN). The DD-PBRN is a community-based participatory research network comprised uniquely of health care professionals, nurses, residential service providers, advocates and self-advocates. As Research Coordinator, Michael facilitates communication among these stakeholders, partner groups and prospective contacts or partners for future work. A major part of the coordinator role is dissemination of past, present and future work through academic lecture and poster presentations locally, regionally and nationally.