2022 Global Down Syndrome Foundation Research & Medical Care Roundtable at NDSC
Co-Organized with the NDSC, the GLOBAL Roundtable is a free benefit and features internationally renowned scientists and medical professionals. Important topics covered included updates on:
- Pediatric Care
- Adult Care
- Important Clinical Trials
- Regression
- Vision
- Alzheimer’s and more
Bryn Gelaro, LSW
Research & Medical Care Senior Director, Global Down Syndrome Foundation
Welcome Remarks
Taylor Murphy
Self-Advocate
Welcome Remarks
Michelle Sie Whitten, MA
Co-Founder, President & CEO, Global Down Syndrome Foundation
GLOBAL Update & Moderator
Joaquín Espinosa, PhD
Executive Director, Linda Crnic Institute for Down Syndrome; Professor in the Department of Pharmacology at the University of Colorado School of Medicine; Founding Director of the Functional Genomics Facility at the University of Colorado
Promising Research & Clinical Trials that aim to Elongate Life and Improve Health Outcomes
Dr. Espinosa will present an overview of research activities at the Linda Crnic Institute for Down Syndrome, with an emphasis on activities within the Crnic Institute Human Trisome Project. Dr. Espinosa will present findings related to dysregulation of the immune system and its relevance to understanding autoimmune conditions, COVID-19, and neurological conditions in Down syndrome. He will also present on clinical trials for immune modulation to improve diverse health outcomes in Down syndrome.
Sigan L. Hartley, PhD
Associate Professor, Human Development and Family Studies, Associate Director, Training, Waisman Center; Associate Professor, 100 Women Distinguished Chair in Human Ecology, Director of School of Human Ecology Graduate Studies, University of Wisconsin-Madison
Sleep and Alzheimer’s Disease in Down Syndrome
In this presentation, families will learn about how sleep is connected to cognitive aging and Alzheimer’s disease in Down syndrome. Strategies for screening and managing sleep problems as a way of promoting healthy cognitive aging will be discussed.
Melissa Parisi, MD, PhD
Chief of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
NIH Down Syndrome Research Funding – INCLUDE Update & Community Participation
Peter D. Bulova, MD
Professor of Medicine, Director of the International Scholars Program, Director of Outpatient Procedure Clinic, Coordinator of the Internal Medicine Medical Student Interest Group, Co-Director of the Magee Center for Women with Disabilities, and Director of the University of Pittsburgh Adult Down Syndrome Center
Jonathan D. Santoro, MD
Medical Director, Neuroimmunology and Demyelinating Disorders Program, Attending Physician, Division of Neurology, Children’s Hospital Los Angeles; Assistant Professor of Neurology, Keck School of Medicine University of Southern California
Regression/Disintegrative Disorder in Individuals with Down Syndrome: The Latest Research
After this presentation, attendees should be able to identify the core symptoms of Down Syndrome Regression Disorder (DSRD), the diagnostic abnormalities that can be observed, and the current therapeutic options to treat the condition. Attendees should also understand the imperative need for further research in this disease state.
Nicole Baumer, MD, MEd
Director, Down Syndrome Program and Assistant Professor, Department of Neurology and Developmental Medicine Center, Boston Children’s Hospital; Instructor of Neurology, Harvard Medical School
In this talk families will learn about updates to the new 2022 AAP guidelines for health supervision for children and adolescents with Down syndrome, including updates to guidance on medical and neurodevelopmental conditions. Families will also learn about research that aims to understand mechanisms of early learning and development, and intervention strategies.
