Global Down Syndrome Foundation Launches National Research & Medical Care Roundtable, Highlights 21 Pre-Eminent Experts in One “Phenomenal” Day
Roundtable attracts over 400 people from 40 states and 8 countries to Children’s Hospital Colorado in conjunction with the NDSC Annual Convention
DENVER (July 29, 2013) – The Global Down Syndrome Foundation held its inaugural national Research & Medical Care Roundtable on July 18, attracting top scientists and researchers focused on Down syndrome. The experts presented their work and answered questions for over 400 attendees, approximately 80 percent being self-advocates and family members, and 20 percent professionals.
The Global Roundtable was a full-day of cutting-edge research and best-practices medical care organized into five parts: an NIH Keynote and four panels focused on Medical Care, Prenatal Testing, Basic Research, and Down Syndrome & Alzheimer’s Disease. Each panel had five experts representing both research and medical care. Expert presenters included Dr. Fran Hickey, Dr. Peggy Kelley, Dennis McGuire, Ph.D., Dr. George Capone, Dr. Peter Bulova, Michelle Sie Whitten, Sue Joe, Dan Ketcherside, Dr. Kelly Lennon, Alberto Gutierrez, Ph.D., self-advocate and Global Ambassador DeOndra Dixon, Yvonne Maddox, Ph.D., Roger Reeves, Ph.D., Katheleen Gardiner, Ph.D., Dr. William Mobley, Ph.D., John Crispino, Ph.D., Tom Blumenthal, Ph.D., Dr. Ira Lott, Jorge Busciglio, Ph.D., Dean Hartley, Ph.D., and Huntington Potter, Ph.D.
“The Global Roundtable was — in a word — phenomenal,” said Cyndi Johnson of Down Syndrome Family Connection in Bloomington, Ind. “I came as the sole representative of a small Down syndrome group with hopes to gather information to take back and share with other families. While that certainly happened, what really caught me by surprise was that I gained information that gave me a plan of action for some of the chronic medical concerns my own daughter is facing. I have a renewed sense of purpose with my daughter’s physical and mental health at the center. The panelists were a wealth of knowledge combined with experience, wisdom and care that was positively energizing.”
“We are grateful to the National Down Syndrome Congress for choosing Denver for its life-changing annual convention. With their help we organized the largest medical care and research conference to date focused solely on Down syndrome,” said executive director of Global Down Syndrome Foundation Michelle Sie Whitten. “We had such an educated engaged audience! Add to that the Sie Center at the Children’s Hospital Colorado, and 21 experts, and the result was just electric.”
The Global Roundtable drew an audience from around the world, with 80 percent of attendees from outside Colorado and 30 people traveling from overseas. In addition to parents and family members of people with Down syndrome, attendees included researchers and leaders of Down syndrome organizations. In follow-up surveys, attendees were clearly impressed with the quality of speakers and presentations, rating them in the top 10 percent of the rating scale. While the largest group of questions focused on “Ear, Nose and Throat” issues, the three most important areas of concern, according to the surveys, were Alzheimer’s disease, cognition and speech issues.
“It was a great pleasure to present at the Global Roundtable,” said Huntington Potter, director of Alzheimer’s disease research at the Linda Crnic Institute for Down Syndrome. “It was clear that the audience was well-informed and concerned about the co-occurrence of Alzheimer’s disease and Down syndrome. With the work at Crnic Institute, I believe we have a great chance at helping both populations.”
“The roundtable and exchanges with the audience were a great experience,” said Roger Reeves, a professor in the Department of Physiology at Johns Hopkins University School of Medicine. “We don’t have that many opportunities to interact with such a large number of families and advocates and I can honestly say it was as informative for us researchers as it was for the families. It also keeps us focused on who our work is actually serving.”
The Global Roundtable’s large audience reflected the keen interest the Down syndrome community has in increasing basic and clinical research benefiting people with Down syndrome. There were many calls in the surveys to hold the Global Roundtable each year in association with the NDSC Annual Convention. This is one of several collaborations between the Global Down Syndrome Foundation and the NDSC.
About the Global Down Syndrome Foundation
The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Formally established in 2009, the Foundation has the primary focus of supporting the Linda Crnic Institute for Down Syndrome, the first academic home in the U.S. committed to research and medical care for people with the condition. Fundraising and government advocacy that corrects the alarming disparity of national funding for people with Down syndrome is a major short-term goal. The Foundation organizes the Be Beautiful Be Yourself Fashion Show — the single-largest annual fundraiser benefiting people with Down syndrome. Programmatically, the Foundation organizes and funds many programs and conferences, including the Denver Broncos Cheerleaders Dare to Cheer Camp, the Global Down Syndrome Educational Series, the Dare to Play Soccer Camp, and the Global Down Syndrome Multi-Language Resource Project. The Foundation is an inclusive organization without political or religious affiliation or intention.
About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institute for Down Syndrome is the first medical and research institute with the mission to provide the best clinical care to people with Down syndrome, and to eradicate the medical and cognitive ill effects associated with the condition. Established in 2008, the Crnic Institute is a partnership between the University of Colorado School of Medicine, the University of Colorado at Boulder, and Children’s Hospital Colorado. Headquartered on the Anschutz Medical Campus in Aurora, the Crnic Institute includes the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado. It partners both locally and globally to provide life-changing research and medical care for individuals with Down syndrome. The Crnic Institute is made possible by the generous support of the Anna and John J. Sie Foundation, and relies on the Global Down Syndrome Foundation for fundraising, education, awareness and government advocacy. It is a research and medical-based organization without political or religious affiliation or intention.
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