Michelle Sie Whitten and her family have spearheaded efforts to improve the lives of people with Down syndrome through research, medical care, education and advocacy.
It’s true that the battles that are fought most furiously are those that hit close to home. For Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, that battle began when she received the amniocentesis test results that indicated her unborn daughter had three copies of chromosome 21, instead of two: Down syndrome.
Down syndrome is a genetic condition, not a disease. The extra copy of chromosome 21 leads to some cognitive impairment and physical delays; people with Down syndrome are also significantly predisposed to certain medical conditions like congenital heart defects and Alzheimer’s disease. However, many people with DS will not have these conditions and, if they do, they’re treatable.
What Whitten learned when she received the news about her daughter was how little information was available—and how much of it was wrong. For example, the doctor who did her amniocentesis told the Whittens the lifespan of a child with Down syndrome was very short, but in reality, most people with DS live into their 60s. The doctors also said that 90 percent of people who have a baby with Down syndrome terminate the pregnancy, a number that is not only misleading, but is also based on a study in Europe and has been proven to be riddled with discrepancies.
Whitten and her husband decided to move forward with the pregnancy and they welcomed their daughter Sophia into the family. But Whitten said that she’d always been an advocate for human and civil rights and equality; now her passion had an even more personal outlet.
“Before having Sophia, I had never met a person with Down syndrome, I didn’t know anything about it,” Whitten said. “It just expanded the spectrum of people I felt passionate about, protecting and advocating for their rights.”
Sophia’s birth touched not only her immediate family, but also her extended family. Anna and John J. Sie, Michelle’s parents, formally established the Global Down Syndrome Foundation in 2009 in Denver. This nonprofit organization is dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. As president and CEO, Whitten has been working for more than 10 years on the various “wins” that the group has affected.
One such win is the creation of the Sie Center for Down Syndrome at Children’s Hospital of Colorado, which provides expert medical and therapeutic intervention for people with Down syndrome in Colorado, the United States and several other countries. The Sie Center, along with the Linda Crnic Institute for Down Syndrome, which is the first academic home in the United States committed solely to research and medical care for people with Down syndrome, is making a true difference in the lives of people with Down syndrome.
Whitten explained that people with Down syndrome are more like the general population than different from it: they want and need an education, an opportunity for a job, and to life a full life.
“Where they’re radically different is in their medical profile,” Whitten explained. “They’re predisposed to a whole bunch of diseases that most people don’t get and they’re highly protected from a whole a bunch of diseases that a lot of people do get.”
For example, there’s a large occurrence of Alzheimer’s and its symptoms, like early on-set dementia, in people with Down syndrome. On the other hand, they seem to be protected from things like solid tumor cancer, breast cancer and certain heart disease. The truth is, though, that there has been little information published on the understanding of the genetic condition (the extra copy of chromosome 21) or of best practices in medical guidelines and care for people with Down syndrome, particularly adults.
The Global Down Syndrome Foundation, along with the Sie Center, the Linda Crnic Institute for Down Syndrome, and other partners, are working to advance research to help improve medical care for people with the condition. But to help that along, Whitten and the Global Down Syndrome Foundation have also been working on correcting the disparity in funding and advocacy given by the government.
Down syndrome is the least-funded genetic condition in the United States. Twenty years ago, Down syndrome research was three to 15 times less funded than such conditions as autism or Multiple Sclerosis. However, this year, after working towards it for 10 years, the Foundation was able to convince Congress and the National Institutes of Health to increase the funding from $37 million to $58 million. They also prescribed, pending votes, an increase in funding to $98 million in 2019.
“Finally, after 10 years of lobbying and education and doing outreach, we’re really moving the needle,” Whitten said. “That research is fundamental for improved medical health outcomes. That’s why it’s so imperative.”
The passion that Whitten feels for the Down syndrome community, that has been underserved and largely neglected for decades, is tangible—and inspiring. It’s not simply about helping a growing population of people with a genetic condition; it’s about caring about people.
Global Down Syndrome Foundation
3239 E. 2nd Ave.
Denver, CO 80206
Don’t miss the Be Beautiful Be Yourself Fashion Show, which celebrates its 10th anniversary this year, on Oct. 20 from 5 to 10 p.m. at the Sheraton Denver Downtown Hotel. The largest fundraiser of the year for the Global Down Syndrome Foundation, the event features a silent/live auction; VIP reception, media red carpet and a fabulous fashion show featuring people with Down syndrome, escorted by celebrities. Visit bebeautifulbeyourself.org for more information.
Katie Coakley is a freelance writer based in Denver covering travel, beer and outdoor adventure. Her work has appeared in newspapers, magazines and national online publications. She’s infinitely grateful for—and inspired by—the work being done by the GDSF.
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