Global Down Syndrome

Michelle and daughter Sophia from the EDITOR WELCOME TO DOWN SYNDROME WORLD™, A PUBLICATION OF THE GLOBAL DOWN SYNDROME FOUNDATION MICHELLE SIE WHITTEN Publisher and Editor The Global Down Syndrome Foundation is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. JOAQUÍN ESPINOSA, PH.D. Executive Director Linda Crnic Institute for Down Syndrome TOM BLUMENTHAL, PH.D. Director Emeritus Linda Crnic Institute for Down Syndrome A REMINDER — I recently attended the memorial service of a young man at the University of Denver (DU). There must have been over a thousand people there. Every step in the aisle was taken, and people were standing against the walls. He worked for the renowned ice hockey team at DU, and the captain and two other hockey team members had us laughing and crying, remembering how he inspired and organized their lives. I thought I knew this young man pretty well. An avid sports fan and keen dancer, he attended our Dare to Play Football Camp and was a regular at our quarterly I You Dance Parties with his lovely girlfriend. He was a GREAT dancer. But as the folks from Adam's Camp, The Rise School, Special Olympics, and The Wayfaring Band came up on stage to share their memories, I realized how much I didn't know about him. I was amazed to know that he had his own place and traveled to various cities to help with disaster relief or volunteer for those in great need. I was truly full of wonder at how he was able to do the incredible things he did. And then, of course, his parents spoke. Beyond their son being born amazing, it is clear their support also allowed him to become the remarkable man he was. They spoke truth and strength, and with such love and humor. They were both able to make it through their words without breaking down, but every time their voices cracked, I found myself quietly sobbing into my tissue. Why does a 31-year-old young man, who is an incredible athlete sporting a six-pack, with a life full of friends, work, and activity have his life cut short? The answer? Meningitis. It was a cold, then it was meningitis, and then he was gone. It could happen to anyone, including to anyone who doesn't have Down syndrome. Right? But then, given who I am and what I know, I have to ask myself, "Does this happen more in people with Down syndrome? Why might it happen more? What can we do about it?" Because our community has been long deprived of research funding related to medical care for people with Down syndrome, we don't have the answers to many simple questions like this. But you can bet your bottom dollar that we are adding that to the list of questions we do have for our adult medical care guidelines, and that despite requiring many years of blood and sweat, we are determined to have those answers — for this extraordinary young man, for my daughter Sophia, and for all people with Down syndrome who deserve longer and healthier lives. This was A REMINDER of why we do what we do at Global — and A REMINDER to spend more time with our loved ones, with or without Down syndrome. MICHELLE SIE WHITTEN PRESIDENT & CEO, GLOBAL DOWN SYNDROME FOUNDATION PUBLISHER/EDITOR, DOWN SYNDROME WORLD™ CONTRIBUTORS NICOLE TSCHETTER Contributing W riter JULIE SMITH Content Manager MEGAN LINDSTROM Proofreader MARISA CUCUZZELLA Proofreader ELLEN R. MEDNICK Proofreader Letters to the EDITOR Thank you, Global Down Syndrome Foundation, for publishing Down Syndrome World™. I always look forward to learning about the latest research and medical developments, as well as reading the stories highlighting individuals with Down syndrome. It is truly remarkable all that you have been able to accomplish in a few short years. From a parent, advocate, and leader of a Down syndrome affiliate organization, your hard work and dedication to the Down syndrome community is greatly appreciated. Martine Hobson Executive Director Down Syndrome Association of Memphis (TN) and the Mid-South Thank you, Global Down Syndrome Foundation, for Down Syndrome World™ magazine. Thank you for showing the world what individuals with Down syndrome can do. I love reading the stories of other self- advocates and learning more about the research being done so all people with Down syndrome can live healthier, longer, and more productive lives. Wils Van Bergen, Self-advocate Orlando, FL GLOBALDOWNSYNDROME.ORG 3

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