In just a few short years, the Global Down Syndrome Foundation (Global) has managed to make a significant difference for the over 400,000 people with the condition in the United States. At the center of the work--which includes ground-breaking research, improvements in the medical care, education, and advocacy-- lies an utterly uncommon human desire: that of a mother to make the best life possible for her child.
A Family Affair
Michelle Sie-Whitten, Global’s Co-Founder, President, and CEO, began working in the arena of Down Syndrome when her daughter, Sophia, now 13, was born with the condition. Her parents, Anna and John of the Anna and John J. Sie Foundation, rallied around her, and the Sie Foundation became the largest private source of grant money for Down syndrome-related research and programs. Michelle’s husband Tom Whitten, a Chinese contemporary art expert, and son Patrick, age nine, are also very supportive of the work.
Michelle, one of five siblings, recalls that her family has always placed a high priority on giving, even they had very little to give. “My father was a serial entrepreneur, and my mother had to manage moving a lot with five kids, pretty much solo,” she says. “One time my father even had to swallow his pride and accept welfare. But whenever we had something, we always helped others, especially my mother.” Michelle says,”She came over from Italy in the mid-1950s with her father and two brothers on a boat with pretty much only the clothes on her back--two shirts and a skirt. She’d switch them up for a different look.” Born and raised in China, her father immigrated to America at age 14, was in a New York Catholic orphanage, got scholarships to attend school, and eventually became the founder and Chairman of Starz Entertainment Group LLC.
Michelle says that as the family gained more resources they began financially supporting nonprofits. “My parents have different approached to giving,” she says. “My mom is like, ‘See that child in need, buy her everything she needs!’ My dad is like, “Let me look at their finances.” I am a mix of both: I give from my heart, and look at sustainability as well.”
Raising Awareness and Raising Money
Despite being the leading cause of developmental delay, Down syndrome is the least-funded genetic condition in the United States, making fundraising a major goal of the foundation-- one that Michelle admits is difficult work. Nonetheless, she and the staff at Global have had great success in both raising and granting funds. To date, the Global Down Syndrome Foundation has provided $400,000 to more than 40 Down syndrome organizations across the nation. Global co-funds more than $1million a year in transformative research and life-changing medical care through its two affiliates-- the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.
Global’s annual Denver event, the “Be Beautiful Be Yourself Fashion Show,” is the largest single fundraiser benefitting people with Down Syndrome in the world. The star-studded signature event features regulars Jamie Foxx and his sister DeOndra Dixon, who has Down syndrome. The event has attracted celebrities such as Alec Baldwin, Helen Hunt, Laura Dern, John C. McGinley, and Terrence Howard, who are consistently outshone by the models with Down syndrome they escort down the runway. The 2016 event will feature Peyton Manning, Mario Lopez, Matt Dillon, John C. McGinely, Jamie Foxx, DeOndra Dixon, and local sports celebrities.
Each year, Global presents the Quincy Jones Exceptional Advocacy Award to two individuals who have tirelessly advocated for the rights of the differently-abled, including a self-advocate with Down syndrome. Jones, a close friend of the Sie Family, was one of the originators of the event.
Since it launched eight years ago, the event has raised over $12 million.
“This event has grown so much. And everyone is our audience-- Democrats, Republicans, our families, our donors, our vendors, and celebrities”, Michelle says. “Our kids are the great equalizers.”
“Of course my biggest motivation is my daughter, Sophia,” Michelle shares. “Situations like that at Pueblo Regional Center* [insert footnote] motivate me. What happens to people with Down syndrome in other countries motivates me. People dying unnecessarily motivates me. We want to make sure that every individual has a chance to lead a healthy, productive life and is treated with respect and dignity.”
She adds: “I am acutely aware of how difficult it is to raise money for Down syndrome. It sounds so narrow. But even other developmental disabilities such as Autism or Fragile X are three-to-eleven-times more funded year to year. That motivates me.”
Research shows that typical people with Alzheimer’s disease have three copies (instead of two) of the Amyloid Precursor Protein gene (APP) in various cells including their brain cells.
Down syndrome is a genetic condition whereby people are born with three copies of chromosome 21 instead of two-- and the APP gene is on chromosome 21. Unfortunately, this means that virtually all people with Down syndrome will have the brain pathology of Alzheimer’s (plaques and tangles in the brain) by the time they’re in their 40s. Clearly being able to study people with Down syndrome from an earlier age, before the onset of the plaques and tangles, will give us a window into the progression of Alzheimer’s. In addition, understanding why up to 30 percent of people with Down syndrome who have the brain pathology of Alzheimer’s do not go on to suffer from dementia or other symptoms of Alzheimer’s may also help us to develop therapies or even a cure for Alzheimer’s. Michelle is optimistic. “This is an example where studying people with Down syndrome not only stands to help this population but millions more.”
The most ambitious platform for research, to date, is the Cnric Institute’s Human Trisome Project Biobank, a first-in-kind cohort study of 1,000 individuals with Down syndrome. With one blood draw from each participant, the technology at the Anschutz Medical Campus will be able to analyze and sequence multiple layers of information that will help us understand why people with Down syndrome are protected from heart attack, stroke, and most cancers, and why they are predisposed to autoimmune disorders and cognitive deficit. The Biobank is expected to be a discovery accelerator for many major diseases.
Patients can participate in the Human Trisome Project Biobank through the Sie Center for Down Syndrome, which opened at Children’s Hospital Colorado in 2010 and is now the largest multidisciplinary center focused on providing excellent medical care to children with the condition. “The center now has 1,200 patients and thousands of patient visits each year. It has many of the leading medical practitioners in the field and has attracted patients from 27 states and seven countries so far,” Michelle shares. Comprehensive care is offered to youth (infants through 21 years old) with Down syndrome, including speech, physical, and occupational therapies. It also serves as a resource for families and primary care doctors by providing up-to-date information, while supporting parents who have received a prenatal diagnosis of Down syndrome.
Yet on the Horizon
Michelle indicates that the research and medical care facilities have much more room to grow and develop, and a world-class medical center for adults with Down syndrome is also in the planning stages. “I’ll know that my work is done when our awareness-building will have change eugenics and discriminatory practices against people with Down syndrome in other countries, and all the children I know with Down syndrome (including Sophia) will be adults, and their parents won’t be afraid of their adult children outliving them because they will be accepted, independent members of society.”
Until then, she continues to fight the good fight.
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