Tuesday, July 30, 2013

Global Down Syndrome Foundation Launches National Research & Medical Care Roundtable, Highlights 21 Pre-Eminent Experts in One "Phenomenal" Day


from The Global Down Syndrome Foundation:
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 the 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
Learn more at www.globaldownsyndrome.org

About the Linda Crnic Institute for Down Syndrome
Learn more at www.globaldownsyndrome.org/crnic-institute

SOURCE: Global Down Syndrome Foundation

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