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. MAKING AN IMPACT! In November 2018, we organized our 10th Anniversary Be Beautiful Be Yourself Fashion Show marking a decade of amazing work at the Global Down Syndrome Foundation. For that, and for our successful advocacy with Congress and the National Institutes of Health, Global received the National Down Syndrome Congress President's Award. We are truly honored. One of many results of our 10th anniversary event was forging a closer relationship with Super Bowl MVP and NFL great Von Miller. His own struggles as a child who was bullied because of his bad eyesight and glasses led him to our event. And that led him to a great kinship with self-advocate Daniel Walshe. Their connection is featured on the cover of this issue. Another celebrity with a huge heart, Dwayne "The Rock" Johnson, is also giving back and sharing his admiration for his childhood community's foster brother, Milton McBride Rosen. The story about how Milton helped coach and train Dwayne is truly heartwarming. Outside our borders, there are so many others making an impact. Aditi Verma, a 25-year-old in India, has turned her love of cooking into ownership of a restaurant and hard-earned independence. In Europe, Down Syndrome Albania landed a coveted four-week training exchange program to work at a humanitarian organization and chose Global! We're excited to share their important work and dreams for the future. Two GREAT milestones on the research front include a potential cure for alopecia areata in people with Down syndrome and a seminal publication, "Behavioral Characteristics of Individuals with Down Syndrome," that paves the way for a better understanding of behavioral issues and improved behavioral outcomes. Of course, we could not have these research results without the dedicated support from our champions in Congress. This issue introduces public-servant and police officer turned first-term congressman Pete Stauber (R-MN) and his equally amazing wife, Jodi, who is an Iraq War veteran. One of their four children, Isaac, has Down syndrome, cementing their formidable advocacy for those who are differently-abled. In life there are comings and goings. In this issue we pay a heartfelt tribute and bid farewell to a real hero, William Vollbracht — a brilliant businessman, community leader, family man, and true cowboy. We are proud to have his granddaughter, Kate, as one of our Global Ambassadors. We hope you enjoy this issue and we thank you all for caring about our children and adults with Down syndrome. Together we are making an impact! MICHELLE SIE WHITTEN PRESIDENT & CEO, GLOBAL DOWN SYNDROME FOUNDATION PUBLISHER/EDITOR, DOWN SYNDROME WORLD™ CONTRIBUTORS MEGAN LINDSTROM Proofreader JON PETTIT Contributing Designer VONDA WESTLAKE Contributing W riter and Proofreader ANA HOLLAND Contributing W riter and Proofreader Letters to the EDITOR Down Syndrome World™ is an incredible tool for parents, like myself. Raising a child with Down syndrome can be challenging, and I am so thankful for this helpful resource. The stories about medical care and research are very informative and make parents aware of what resources are available and what is being done to improve their children's lives. In addition, the advocacy articles about Down syndrome legislation and amazing stories of support from Hollywood stars are truly inspiring. All the stories show the hard work being done for our children, their health, and their rights. I look forward to traveling the world with my copy of Down Syndrome World™ magazine and advocating for people with Down syndrome. Mojisola Agbebi, Mother of a child with Down syndrome Upper Marlboro, 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/Editor and Content Manager The stories in Down Syndrome World™ encourage me to pursue my own hopes and dreams. It inspires me to see people with Down syndrome accomplishing so much. It makes me proud to have Down syndrome. Ray Brewer, Self-advocate Denver, CO GLOBALDOWNSYNDROME.ORG 3

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