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 Scientific Writer & Editor JUGGLING — This July, a team of dedicated people from Global and our affiliates headed to Dallas to attend the National Down Syndrome Congress (NDSC) Annual Convention. If any of our readers have NOT attended, you must put it on your bucket list, as it is hands-down one of the best things we do every year! The convention was a huge success — the largest ever with more than 4,000 attendees. The Global team attended twice as many events and workshops as usual, starting at 7 a.m. most mornings and ending after midnight. And of course we were THRILLED that two of Global's doctors, Joaquín Espinosa, Ph.D., and Dennis McGuire, Ph.D., received prestigious awards from the NDSC and the Down Syndrome Medical Interest Group, respectively. We returned to Denver on Sunday, held a special fundraiser event Wednesday, and then headed to the mountains Friday for the Courage Classic bike ride benefiting our pediatric medical care initiatives. To top it off, we moved into our new headquarters the following week — all without missing a beat! This edition of Down Syndrome World™ is full of dedicated hard work: doctors/athletes making a difference for their daughter, Quinn; Dr. Espinosa's breakthrough recasting of Down syndrome as an immune system disorder; the great achievements of Down Syndrome Affiliates in Action and Down Syndrome Network of Montgomery County; and the lifelong devotion of George Capone, M.D., to his adult patients. We also cover the harrowing but amazing story of Brett Logan's journey through the foster care system, as well as award- winning actor and devoted dad John C. McGinley's efforts to end the R-word. The Down syndrome community is working at a break-neck pace, and the strides we have made in the last decade are truly remarkable. But as I cough through writing this piece and bemoan my thrown-out back, I am reminded of the important analogy given by Brian Dyson, former CEO of Coca-Cola, about the "5 balls of life:" Imagine life as a game in which you are juggling some five balls in the air. You name them work, family, health, friends, and spirit. And you're keeping all of these in the air. You will soon understand that work is a rubber ball. If you drop it, it will bounce back. But the other four balls — family, health, friends, and spirit – are made of glass. If you drop one of these, they will be irrevocably scuffed, marked, nicked, damaged, or even shattered. They will never be the same. You must understand that and strive for balance in your life. So my hardworking friends, please get a cup of tea, coffee, or wine, read this lovely edition and take a moment to relax and ignore the rubber ball. It is something I will surely do (in November)! MICHELLE SIE WHITTEN PRESIDENT & CEO, GLOBAL DOWN SYNDROME FOUNDATION PUBLISHER/EDITOR, DOWN SYNDROME WORLD™ CONTRIBUTORS REJENA CARMICHAEL Contributing W riter JULIE SMITH Content Manager ELLA PAIRMAN Content Manager MEGAN LINDSTROM Proofreader ELLEN R. MEDNICK Proofreader Letters to the EDITOR The Global Down Syndrome Foundation allowed me the opportunity to attend the Congressional hearing in October. That experience enlightened me as to the effect of Alzheimer's disease on the Down syndrome community and the impact that legislation has on the monies needed for research. Thank you, Down Syndrome World™ for providing us with the most up-to-date information about the latest advances in Down syndrome research and medical care. Lisa Stephenson, Parent New Haven, CT Each edition, I find exciting and inspiring stories of individuals with Down syndrome doing amazing things, showing off their many talents, or just being an important part of their community. When I read about other self-advocates following their dreams, their stories encourage me to dream bigger and not to be afraid to try new things. Eric Ford, Self-advocate Lake Worth, FL GLOBALDOWNSYNDROME.ORG 3

• Cover