May 3, 2013
The Down Syndrome Foundation was founded in 2009 by Michelle Sie Whitten, and her parents Anna and John. They have dedicated their time and energy to speaking out about Down syndrome and increasing its medical research. Whitten is the director of the foundation. Her position allows her to organize the foundation’s special events. This year, the Be Beautiful, Be Yourself Gala will take place in Washington, D.C. on May 8th. Whitten spoke with DC Spotlight Newspaper about her role and the gala that will feature the multi-talented singer, Sheryl Crow.
DC Spotlight: Who founded the Global Down Syndrome Foundation and what is their mission?
Michelle: The Global Down Syndrome Foundation was founded in 2009 by my parents and myself. We needed an organization that focused on research and medical care for people with Down syndrome. The area of research and medical seemed to have a vacuum, so we have stepped in with aspirations to be global.
DC Spotlight: What is your role in the foundation and why did you get involved in the cause?
Michelle: About ten years ago, I had my first child Sophia, and she happens to have Down syndrome. I was fortunate enough to know ahead of time and that gave me a lot of time to prepare and to do some market research. I discovered that Down syndrome is one of the least funded genetic conditions by our federal government in terms of research dollars. Also trying to find good medical care for my daughter was challenging. I am very fortunate to have parents who did very well in the cable industry, and we decided they would put a very large amount of their personal wealth towards establishing an institute for research, a center for medical care, and then a non-profit which is the Global Down Syndrome Foundation to do the advocacy work and the fundraising for the research and medical care.
DC Spotlight: What does the gala mean to kids who have Down syndrome, and how does the money raised benefit the kids?
Michelle: The Be Beautiful, Be Yourself Gala is a wonderful experience for the person with Down syndrome. We have children and adults and they get to be onstage as a professional model and escorted by celebrities, and in D.C., we have congressional representatives. They have a night where they are the stars. They rock the runway. It allows them to shine and build confidence. In terms of the audience, it’s really inspirational. It is really electric. So I think everyone who attends the gala walks away having a dramatically different perspective of people who have Down syndrome or who are differently abled. So those negative stereotypes really shatter. The money goes toward very important medical research and without that money, we cannot improve the life, the medical, and the health outcomes of our children with Down syndrome.
DC Spotlight: I understand that Aretha Franklin will perform at the gala. She’s a music legend. How did she get involved with the gala?
Michelle: Unfortunately, she had to cancel, which was very difficult for us. Her agent only let us know about two weeks ago, so we didn’t have a whole lot of time, but we were very fortunate and we were able to get Sheryl Crow.
DC Spotlight: What are the ages of the participants in the gala, and how will they perform? Singing? Dancing?
Michelle: Well, we don’t have a maximum age, but we do have a minimum age and we have a competitive audition process. We have many more people who audition than can be in the event so that is very difficult to decide. We pledge to the people who didn’t get in one year, if they audition the next year, they kind of go to the front of the line for the next years audition. There are 25 models in this year’s fashion show from seven years of age and up, seven being the minimum age. It is just like a professional fashion show. You have the cat walk of 42 feet and each child is escorted by a football player, or a cheer leader, or a congressional representative. Then we have Kyra Philips from CNN, who’s the MC, and as they are walking, she introduces them and who they are and what they like. They’re modeling clothes from Bloomingdales. And they are just walking out, strutting their stuff, doing the wave like they’ve done in practice. Then they come back and they’re off. Then there’s a grand finale, and Quincy Jones is our spokesperson so we always do the grand finale to “We Are the World.”
DC Spotlight: Is this only a DC event and if not, where has it or will it expand?
Michelle: It started in Denver, so we have it every year in Denver…because it is our backyard. It’s our headquarters; it’s a much larger event. This is our second year doing D.C. and we’ve gotten really great musical acts each time, which is wonderful. But the kids and adults with Down syndrome are really the ones who steal the show. We have had a lot of people in the Down syndrome community and some celebrities, so that we have to have this in L.A. and we’ve had a lot of folks wanting it in New York. Over time, we hope to expand into those markets as we grow the number of people we have.
DC Spotlight: Out of all the other foundations that advocate for Down syndrome, what would you say this foundation provides that no other foundation for Down syndrome does? Or what distinguishes your foundation?
Michelle: I think we’re laser focused on research and medical care. And we have created and established the first academic home in the United States for Down syndrome. We have basic research, we have clinical research, and we have clinical care. And under clinical care, we established the Sie Center for Down syndrome. In just two years, we are now the largest multidisciplinary team providing medical care to people with Down syndrome in the country.
DC Spotlight: How can families of Down syndrome kids get involved in the events?
Michelle: We have a website, the Globaldownsyndrome.org and on the website there’s a registration page for the D.C. fashion show auditions and then for the Denver fashion show auditions. So they register and then they have to come to the auditions. We have a panel of judges, and then within a couple weeks, we let the people know if they are going to be in the fashion show and if they haven’t been excepted, we encourage them to apply again next year.
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