The National & International Organizations Will Work Together on Outreach and Education Associated with Research & Medical Care at the NDSC Annual Convention and Beyond
GLOBAL and NDSC sign agreement for a multi-year collaboration.
DENVER, ATLANTA, PHOENIX, July 24, 2024 (GLOBE NEWSWIRE) — Today, at the National Down Syndrome Congress (NDSC) Annual Convention, the largest Down Syndrome annual gathering in the world, Global Down Syndrome Foundation (GLOBAL) and NDSC announced a multi-year collaboration agreement.
The agreement solidifies GLOBAL and NDSC’s 12-year collaboration around research, medical care outreach, and education at the NDSC Annual Convention. Specifically, it ensures that (1) thousands of NDSC Annual Convention attendees can participate in the convention’s GLOBAL Research & Medical Care Roundtable as a free benefit associated with registration, (2) participation in Crnic Institute research will expand to on-site hearing exams, and (3) there is continued sponsorship and support for the convention and NDSC’s important resources, such as various toolkits.
The GLOBAL Research & Medical Care Roundtable (GLOBAL Roundtable) has educated over 4,000 self-advocates, parents, and professionals on cutting-edge scientific breakthroughs, clinical trials, medical best practices and more. Surveys associated with the GLOBAL Roundtable consistently average 4.8 out of 5 underscoring its impact. Anyone who has registered for the NDSC Annual Convention can register for the GLOBAL Roundtable for free. This year’s GLOBAL Roundtable includes welcome remarks from NDSC Executive Director, Jim Hudson, GLOBAL President & CEO, Michelle Sie Whitten, GLOBAL Vice President for Research and Medical Care, Bryn Gelaro, and Author, Speaker, Actor, Advocate & Quincy Jones Exceptional Advocacy Awardee, David Egan. The GLOBAL Roundtable slate of renowned Down syndrome experts for 2024 are:
- Joaquín Espinosa, PhD, Executive Director, Linda Crnic Institute for Down Syndrome (Crnic Institute) – Dr. Espinosa will discuss the latest research topics from the Crnic Institute for Down Syndrome.
- Melissa Parisi, PhD, MD, Chief of the Intellectual and Developmental Disabilities (IDD) – Dr. Parisi will discuss The NIH INCLUDE Project: Accelerating Research Discoveries for People with Down Syndrome Across the Lifespan.
- Michael Rafii, MD, PhD, Professor of Clinical Neurology at the Keck School of Medicine and Medical Director of the Alzheimer’s Therapeutic Research Institute (ATRI) – Dr. Rafii will explore the intersection of Down syndrome and Alzheimer’s disease.
- Elise Sannar, MD, Associate Professor of Psychiatry and Pediatrics, Sie Center for Down Syndrome at Children’s Hospital Colorado & University of Colorado, Anschutz Medical Campus Aurora, CO – Dr. Sannar will share her expertise on psychiatric medication use in individuals with Down syndrome.
- Lina Patel, PsyD, Associate Professor of Child and Adolescent Psychiatry at the University of Colorado School of Medicine – Dr. Patel will present on differentiating challenging behaviors from mental health concerns in individuals with Down syndrome.
- Nicole Baumer, MD, MEd, Director, Sie Center for Down Syndrome, Department of Pediatrics, Children’s Hospital Colorado – Dr. Baumer will address co-occurring neurodevelopmental conditions in Down syndrome.
“We are so pleased to continue our collaborations with the NDSC and to have supported their must-attend annual convention for nearly twenty years,” says Michelle Sie Whitten, President & CEO of GLOBAL. “With Jim Hudson as the incoming Executive Director and the NDSC’s wonderful long-time staff, we are excited to see our joint efforts grow to reach thousands more people with Down syndrome and their families.”
Jim Hudson says, “Before coming to the NDSC, I was the Executive Director of the Down Syndrome Association of Greater Cincinnati. Several years ago, we did a needs assessment of our Cincinnati families. One of the items that repeatedly popped to the top of the list was the importance of accessibility and quality medical care for their loved ones with Down syndrome. So, when I came to the NDSC, I was very excited to learn more about this fantastic partnership with our friends at the Global Down Syndrome Foundation, who have organized these sessions for over ten years. As NDSC’s newest Executive Director, I am pleased to expand this exciting multi-year partnership.”
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About the National Down Syndrome Congress Annual Convention
Each year, thousands of people from around the globe attend the National Down Syndrome Congress Convention. For many, it’s to hear from world-renowned experts; for others, it’s to experience a one-of-a-kind community event. Our Convention includes multiple conferences for educators, siblings, youth and adult self-advocates, and our unparalleled Advocacy Training Boot Camp, all alongside the GLOBAL Medical Research Roundtable.
About the NDSC
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome. Founded in 1973, we are the leading national resource of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of diagnosis, whether prenatal or at birth, through adulthood.
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 2,500 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, X and Instagram.
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Attachment
- GLOBAL and NDSC sign agreement for a multi-year collaboration.
CONTACT: Cole Wilkes Global Down Syndrome Foundation (203) 500-1914 cwilkes@globaldownsyndrome.org Samantha Iannone National Down Syndrome Congress (609) 230-7485 sam@ndsccenter.org Anca Call Global Down Syndrome Foundation (720) 320-3832 acall@globaldownsyndrome.org
