Global Down Syndrome Foundation & National Down Syndrome Congress Sign Multi-Year Collaboration Agreement
July 24 2024 - 6:18PM
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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- GLOBAL and NDSC sign agreement for a multi-year
collaboration.
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