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. TIRED BUT THANKFUL! TODAY IS ARGUABLY THE BEST time to be born or living with Down syndrome in the United States. In part, that is because the National Institutes of Health (NIH) continues to increase funding for Down syndrome research and medical care. This will most certainly help elongate life and is already helping to improve health outcomes for our loved ones with the condition. Of course, this did not happen overnight, and it took the Global Down Syndrome Foundation 10 years of painstaking lobbying and advocacy with thousands of self-advocates and family members. But it worked. And though we are tired, we are excited to share in this issue that the NIH announced $77 million (with $35 million in new funding) for Down syndrome research for 2019! With Thanksgiving and the year-end quickly approaching, it is definitely a time to reflect and be grateful. Grateful to our representatives featured in this issue, Barbara Lee (D-TX) and John Moolenaar (R-MI), who, along with others on the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, helped formulate the Congressional directive for NIH to increase Down syndrome funding. Grateful to Chipotle and our corporate partners for their generosity. Grateful for our amazing Quincy Jones Exceptional Advocacy Award winners, Megan Bomgaars and Amanda Booth, who are highlighted in this issue. These two women have paved the way in the industries of television, entrepreneurship, and modeling for those with Down syndrome. Grateful for our dedicated experts at the East Texas Down Syndrome Group for making a huge difference every day, and Joan Medlen who has literally written the book on nutrition and weight management for kids and adults with Down syndrome. It is also that time of year when school has started, individualized education programs (IEPs) are playing out, and students and parents may have challenges at school. We hope the article on IEPs will help our readers in this regard. Even with the most talented of students with Down syndrome, there are struggles, as our 2019 Ambassador Charlotte Fonfara-LaRose can attest. Charlotte and the award-winning actor Colin Farrell grace the cover of this issue of Down Syndrome World™, and we are grateful for their willingness to share their own stories. Farrell, whose son, James, has Angelman syndrome, bonded with Charlotte at our 10th anniversary Be Beautiful Be Yourself Fashion Show. Personally, I am grateful to all our readers, families, partners, and supporters who give meaning to our hard work and allow us to succeed in building a truly brighter future for those with Down syndrome. MICHELLE SIE WHITTEN PRESIDENT & CEO, GLOBAL DOWN SYNDROME FOUNDATION PUBLISHER/EDITOR, DOWN SYNDROME WORLD™ CONTRIBUTORS MEGAN LINDSTROM Proofreader VONDA WESTLAKE Contributing W riter PATRICK GREELEY Contributing W riter JON PETTIT Contributing Designer ANA HOLLAND Contributing W riter Letters to the EDITOR As a fellow organization that actively advocates for inclusion in all aspects of life, we find Down Syndrome World™ magazine a perfect companion in our pursuit of a better world. The articles on research and medical care are very helpful to our families. It's inspiring to learn about Global's important work to improve the lives of our loved ones with Down syndrome. Jason Schlosky Director of Marketing, Personal Assistance Services of Colorado (PASCO) Lakewood, CO MICHELLE SIE WHITTEN Publisher and Editor JOAQUÍN ESPINOSA, PH.D. Executive Director, Linda Crnic Institute for Down Syndrome Scientific Writer and Editor REJENA CARMICHAEL Content Manager and Contributing W riter Cover Photo: Jared Wilson When I speak to groups, I encourage people to shine their light in this world. I love Down Syndrome World™ because it shines a light on people with awesome abilities, like me. Thank you, Michelle Sie Whitten and the Global family, for being there for us. Tim Harris Self-advocate, restaurant entrepreneur, and public speaker Albuquerque, NM GLOBALDOWNSYNDROME.ORG 3

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