Her prestigious family history is well known. As the daughter of philanthropists and community leaders Anna and John J. Sie, Michelle Sie Whitten is a phenomenon unto herself. With a perfect blend of earthy calm and enthusiastic passion for her family and her purpose and focus for the Global Down Syndrome Foundation that she co-founded with her parents after the birth of her daughter Sophia, who has Down syndrome, Michelle is a remarkable pioneering woman who is aware of her own all-encompassing role in the community.
As I talk with Michelle in her office, just a floor below, you can hear the construction build-out taking place on the new offices for the Global Down Syndrome Foundation as they have outgrown their present space. Michelle is not easily rattled by any of the noise. She seems incredibly balanced, insightful - and with all she has accomplished - has already left her mark at the young age of 46.
For making a lifetime commitment to bringing awareness and equality to those who have Down syndrome, and so far succeeding by raising millions of dollars, Michelle Sie Whitten will be honored as the 2014 Excelsior Youth Center’s “Triumphant Woman” on March 7, 2014. The award recognizes women who have made “the difficult journey of overcoming challenges to achieve greatness.”
One of the most successful and highly attended (over 1,000 guests) events in Denver is Global Down Syndrome Foundation’s “Be Beautiful Be Yourself” Fashion Show, a fundraiser for the Linda Crnic Institute for Down Syndrome on the Anschutz Medical Campus and the Sie Center for Down Syndrome at the Children’s Hospital Colorado, and one not to be missed with a long list of celebrities and Denver dignitaries in attendance. The event brings to the forefront the strides made in providing the best care for people with Down syndrome and the efforts that have significantly improved their quality of life and their future.
Michelle Sie Whitten with her vivacious charm doesn’t miss a beat, and even for a self proclaimed “workaholic,” she is still eager to have some fun and find balance in her life. For so many, she is a guiding light to a future where there is proper care and respect for all and everyone has a chance to live up to their potential.
When did you know for sure you would dedicate your life to Down syndrome causes? I knew when Sophia was born that I would be involved in Down syndrome causes. I didn’t know until she was about three that I would dedicate my life 24/7 to it. Once you get on the treadmill of building something so life-changing ,then it is difficult to get off, and it sort of turns into a calling.
What is the goal of the research being done in Down syndrome? The goal is to improve the health and quality of life for people with Down syndrome. For example, our Crnic Grand Challenge Grants are researching respiratory issues, cancer, use of morphine levels, Alzheimer’s and autoimmune disorders in people with Down syndrome.
How often do other conditions go hand in hand with Down syndrome? People with Down syndrome are at a higher risk for several diseases, including Alzheimer’s disease. But people with Down syndrome are at a decreased risk for other diseases. For example, it is very rare for people with Down syndrome to suffer from heart attack, stroke, or solid tumor cancer.
What do you feel are the greatest advances made (through the last couple of decades) to improve the lives of people with Down syndrome? Down syndrome is one of the least funded genetic conditions by the National Institutes of Health, so not a ton has been done in the last two decades in terms of clinical research or basic research. I’d say the key advances have been (1) dismantling of the inhumane institutions where most of our kids were put and giving them the right to attend school – now that they are at home and have the right to go to school - their IQ levels increased tremendously and most can read and write and learn. (2) Pediatric heart surgery advances and the right for a child with Down syndrome to get that life-saving procedure has also contributed to the doubling of lifespan of a person with Down syndrome since the 1980’s.
How hands on are you with the planning of the “Be Beautiful Be Yourself” Fashion Show event? VERY! But my goal is to get less so over time. I have a great team that contributes to every aspect of the event and as our team grows, I know I will be able to step back and enjoy the event more as a participant. I will probably always produce the videos though!
I ask all married people this: “What is the secret to wedded bliss?” Having a lot in common and a very similar world view on one hand. On the other hand, I can’t read him 100% and he can’t read me 100%, so there is still that element of surprise. Also at some point, it helped us to acknowledge that despite our similarities there would always be a cultural divide. He’s still very English and I’m SO American!
What qualities do you look for in a friend? Compatibility, great sense of humor, can let their hair down, and honesty and loyalty.
Aside from your family, what is your most treasured possession? My ancestry and nationality. I am fiercely proud about being first generation Italian-Chinese and all the great culture and history that comes with that. I am equally proud to be American and lucky enough to be in this country where being an American, an Italian and a Chinese is accepted and not a contradiction.
What are some of the noticeable changes taking place in China these days? The country has become less agrarian; and because of the rapid economic expansion, China has a big air pollution problem. The government has recognized the importance of enforcing new environmental standards and restrictions. When I was running Encore International, there was a breakthrough in Chinese bureaucracy, and I was able to bring television shows like Ugly Betty and Desperate Housewives to China!
What keeps you so grounded? My children and maybe my husband. I’m a workaholic, and I don’t always take care of myself – too little sleep, almost no exercise – but then I think about my kids and wanting to be around for when they are teenagers, when they get married, and if I’m lucky enough to see them create families. Then I sigh, go to bed or even (gasp) get on that treadmill.
Can you tell us about a cherished family tradition? For my immediate family we have a new tradition where we really cherish dinner time and share something about our days. For my extended family, our Christmas dinners were always amazing. My mother is southern Italian so it was seafood, seafood and seafood (especially an Italian fish called “baccala”). So after a feast, my Chinese father would get out the big bowl, give us all a few dollars, and then we’d play craps all morning. What a hoot! We have kept the food part but not the craps for our kidsJ.
If you have time for books and movies – what’s the most recent book you’ve read and your favorite movie of the year? How about a magazine you can’t live without? Book: Recently I read The Balance Myth by Colorado author Teresa A. Taylor – I would recommend it to any working mom! TV show: I can’t remember seeing any recent movies, but I just saw the TV show Ground Floor with John C. McGinley and it is GREAT. We are very lucky to have John on the board of Global Down Syndrome Foundation so we want to support him but regardless, this show is a must see! Magazine: Elle Décor.
Where do you see you yourself 10 years from now? Semi-retired. No, just kidding. That’s probably not possible. Spending more time with the kids who will be teenagers (not sure if they will appreciate that!) and my husband. Continuing to help with the fashion show and spending my work-time building a coffee shop and retail store that hires people with Down syndrome and sells goods created by people with Down syndrome from all around the world.
How do you want people to remember Michelle Sie Whitten? As a dedicated mom, wife and friend. Someone who made a significantly positive difference for people with Down syndrome and those who are differently-abled. And as an Italian-Chinese-American who liked a challenge or twoJ.
