Global Down Syndrome

Michelle and daughter Sophia from the EDITOR WELCOME TO DOWN SYNDROME WORLD™, A PUBLICATION OF THE GLOBAL DOWN SYNDROME FOUNDATION The Global Down Syndrome Foundation is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy. PLANNING THE NEW YEAR For many people, the New Year begins in January. But growing up in a Chinese- Italian household celebrating the Chinese Lunar New Year, I always felt lucky to have two bites at the "Clean Slate" apple. This year, our celebrations included Feb. 5 — the Chinese New Year of the Pig. If you believe in the Chinese Zodiac and were born in 1935, 1947, 1959, 1971, 1983, 1995, 2007, or 2019, you are a Pig! Don't worry — the pig represents someone who is hard-working, peace-loving, and generous. So we look at the new year as an auspicious year to make money, launch successful projects, be rewarded for gentle and altruistic behavior, create international relationships, reorder governments, and travel. So what's the takeaway? For everyone at Global, it is to have ambitious life-changing goals for people with Down syndrome and not get burned out or stretched too thin. And, IF we can get truly organized, we can answer some long-standing questions. In this issue, we do that in spades. With the help of our families and local Down syndrome organizations, we get to the bottom of Down syndrome and moyamoya disease, a rare blood vessel disorder. Of course, so many of these questions could be answered with more research funding. Happily, we had a banner year in 2018, when our self-advocates, including those from the Down Syndrome Guild of Dallas, and our congressional champions helped us convince the National Institutes of Health (NIH) to increase Down syndrome research funding to a milestone $59 million. We are duly excited to capitalize on the year of the Pig and hope to see a new milestone $80 million (!) from the NIH, helping us increase lifespan and health outcomes for those with Down syndrome. We are honored to profile three leaders who helped make this all happen — Global AcceptAbility Gala Ambassador CC Mullen and Sen. Michael Bennet (D-CO) and Rep. Steve Womack (R-AR). This year, we are also looking to expand our international work. Global joined many others in celebrating World Down Syndrome Day, including helping co-organize the largest Down syndrome awareness event on the continent of Africa, and will take a leadership role at the T21 Research Society International Conference in Barcelona this summer. In addition, this issue of Down Syndrome World™ magazine highlights an ambitious entrepreneur, Blake Pyron, who is one of the only business owners in Texas with Down syndrome. We are hugely indebted to Global's 2018 Quincy Jones Exceptional Advocacy Award winner Zack Gottsagen and his Peanut Butter Falcon co-stars, Dakota Johnson and Shia LaBeouf, for gracing the cover of our magazine. We hope you enjoy this issue and we wish you a happy, healthy, and prosperous year of the Pig! MICHELLE SIE WHITTEN PRESIDENT & CEO, GLOBAL DOWN SYNDROME FOUNDATION PUBLISHER/EDITOR, DOWN SYNDROME WORLD™ CONTRIBUTORS MARTHA CRONEN KEELE Proofreader MEGAN LINDSTROM Proofreader JON PETTIT Contributing Designer VONDA WESTLAKE Proofreader ANA HOLLAND Proofreader Letters to the EDITOR I am a man with Down syndrome, and I love seeing photos of people like me enjoying their lives and reading stories about how they are pursuing their dreams. Down Syndrome World™ shows the world all the amazing things people with Down syndrome can do. Bert Defeo, Self-advocate Olney, MD MICHELLE SIE WHITTEN Publisher and Editor JOAQUÍN ESPINOSA, PH.D. Executive Director, Linda Crnic Institute for Down Syndrome Scientific Writer and Editor REJENA CARMICHAEL Contributing W riter and Content Manager Cover Photo: Jared Wilson The articles in Down Syndrome World™ are valuable resources to our parents and family members of individuals with Down syndrome. The science and medical articles are very helpful and informative. I love reading the human interest stories about inspiring people with Down syndrome. What an incredible learning tool! Lauren Camp, Executive Director, Down Syndrome Association of Delaware Middletown, DE GLOBALDOWNSYNDROME.ORG 3

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