Today we’d like to introduce you to Michelle Sie Whitten.
Michelle, before we jump into specific questions about the organization, why don’t you give us some details about you and your story.
I am the fourth of five kids born to immigrants who came to the US to live the American dream. My mom is from Italy and my dad is from China. They instilled a pretty intense work ethic in us from a young age. I got my BA and MA degrees in International Relations with a focus on East Asia Security and Diplomacy from Tufts and Harvard respectively and spent a year at Peking University.
My father was a pioneer in aerospace and then in the cable TV industry. I followed in his footsteps and from 1993 to 2005, I worked in the cable industry. My first job was lugging cable TV hardware across China selling to newly burgeoning cable TV operators and consulting for Time Warner, Comcast, and Liberty Media to pay for my trips to Asia. Eventually, I had the opportunity to serve as President & CEO of Encore International and we established several joint ventures including the first official American media programming office in China.
I met my English husband, Tom, in China and a few years later, we were pregnant with our first child. Nineteen weeks into my pregnancy, I had an amnio and got the prenatal diagnosis of Down syndrome. During my pregnancy, the amnio doctor, the pediatric cardiologist, and many others encouraged me to terminate and also gave me inaccurate information about Down syndrome. The worst of which was that our baby would most likely “die by three.”
I did my own research and at that time, the lifespan for people with Down syndrome was fifty. Today, it is sixty. When our child Sophia was born, she had a complete atrial ventricular septal defect and needed open-heart surgery when she was 3 months old. I will never forget what it was like to give our baby to the nurse and see those big doors close and not know if we would hold her again.
Being a bit of a type-A personality, I couldn’t understand why more wasn’t known medically about people with Down syndrome. I flew to DC and met with the then Director of the National Institutes of Health (NIH), and learned that Down syndrome was one of the least funded genetic conditions by the NIH, despite being the leading cause of developmental delay in the US and the world.
A few years later, my parents retired from the cable TV industry and donated most of their earnings to help me establish the Global Down Syndrome Foundation. Our goal? To save and transform the lives of people with Down syndrome through research and medical care.
Overall, has it been relatively smooth? If not, what were some of the struggles along the way?
It definitely has not been a smooth road. First and perhaps foremost, it has been very difficult to find life balance. I feel a large part of Global’s success can be contributed to the all the time I invested, which has resulted in a lot less personal and family time. While I think I do a pretty darn good job of being a mom to our Sophia and Patrick. It is difficult to find time for hobbies or leisure activities. I do make sure to take at least one family vacation a year. And this year, I am determined to accomplish my ongoing resolution to get fit and take more weekends off. Another big challenge was the NIH. Despite providing them with ample examples of why we should be investing in Down syndrome research, the funding didn’t change. It took us TEN years of outreach and lobbying to finally move the needle. But we did move that needle.
Discrimination and ignorance were other challenges along the way. When I conceived our marquee annual fundraiser, the Be Beautiful Be Yourself Fashion Show, a high-end retailer refused to support us and offered to dress only our professional models, but balked at dressing our models with Down syndrome because it would be “incongruent.” Along the way, I was told it was “impossible.” Impossible to do a fashion show with models who have Down syndrome. Impossible to get more funding from NIH, impossible people would invest in Down syndrome, impossible to get support from a fragmented community, impossible to run a non-profit like a for-profit. Sometimes the negativity was overwhelming, but the people with Down syndrome we serve and their amazing families, kept us going.
Please tell us about the organization.
Established in 2009, the Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL helped establish the first-ever Down syndrome research institute, supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide and is part of a network of Affiliates: the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center, all on the Anschutz Medical Campus.
We are proud of what we have accomplished with and for people with Down syndrome and their families. With our families and champions in Congress and at NIH, we moved the annual NIH funding for Down syndrome research and medical care from $20+ million to over $100 million this year. We still have a long way to go. After twenty years at $20 million, we have lots of catching up to do. By way of example, Autism has been at $200+ million for years. To be clear, we don’t want Autism to get less, we simply want Down syndrome to get its fair share.
Investment in research and medical care has a direct impact on health outcomes for people with Down syndrome – and we’re seeing that every day! Our scientists made a huge discovery that allows us to categorize Down syndrome as an immune system disorder and better treat our patients.
Ironically, a large percentage of our operating revenue that allows us to underwrite medical care and research comes from GLOBAL’s Be Beautiful Be Yourself Fashion Show! Another point of great pride. The event that was “impossible” now brings in about $2M for GLOBAL in revenue each year.
There are so many other points of pride – we created an informative and accurate Prenatal Testing & Down Syndrome Information pamphlet, we are about to publish the FIRST Medical Care Guidelines for Adults with Down Syndrome, and we publish the award-winning Down Syndrome World™ magazine.
Today, what I’m most proud of is how we are responding to the devastating COVID-19 pandemic. Unfortunately, most people with Down syndrome are “high risk” for COVID-19 due to underlying medical conditions. In March, we quickly worked round the clock with our other national colleagues and created a Down syndrome/COVID-19 Q&A (https://www.globaldownsyndrome.org/wp-content/uploads/2020/04/04-29-2020-QA-on-COVID-19-Down-Syndrome-Expanded-Version.pdf) in English and Spanish so our families can understand how to be more vigilant.
We organized 140+ disability and social justice organizations in Colorado to support our Governor’s executive order preventing discrimination against those with disabilities receiving COVID-19 care (https://www.globaldownsyndrome.org/face-ethical-aberrations-several-states-colorado-stands-strong-discrimination-covid-19-care/). In other states, they actually have state or hospital policies that encourage medical staff to not provide COVID-19 care to those with disabilities if there are scarce resources!
GLOBAL has also provided the little funds that we do have to COVID-19 Emergency Relief Global Grants for people with Down syndrome and their families and small Down syndrome organizations across the state (https://www.globaldownsyndrome.org/covid-19-relief-grants/). Finally, we are working hard to ensure people with intellectual and developmental disabilities in group homes have PPE.
If you had to go back in time and start over, would you have done anything differently?
If I could go back in time, I might do somethings different, but starting all over, nothing. What GLOBAL is doing, long-term legacy work for people with Down syndrome, is something that everyone who works at GLOBAL, works with GLOBAL, or supports us can be very proud of.
- Address: 3239 E 2nd Ave, Denver, CO 80206
- Website: https://www.globaldownsyndrome.org/
- Phone: 303.321.6277
- Email: firstname.lastname@example.org
- Instagram: @globaldownsyndrome
- Facebook: @GDSFoundation
- Twitter: @gdsfoundation
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