MICHELLE SIE WHITTEN // Co-Founder + President of Global Down Syndrome Foundation
MICHELLE SIE WHITTEN
Co-Founder + President of Global Down Syndrome Foundation
Describe your journey of how you got to today and the aha moment that led you to launch the organization you created?
I was born into an immigrant family – my mother is from Italy and my father is from China. From an early age, I was well aware of our differences (including how strict my parents were) and sometimes lamented that I wanted parents who were more American. But being brought up in an immigrant/mixed marriage, I was also keenly aware of prejudice and felt deeply about where it stems from and how consistent education and organized solidarity can change it.
So when I got the prenatal diagnosis that my daughter Sophia would have Down syndrome, I started to worry about the health challenges and discrimination she would face potentially at every stage of her life. That was an aha moment for me, and from there I started to think about my exit from the cable TV industry and how the next chapter of my journey would be dedicated to ensuring that Sophia and all people with Down syndrome were protected and could reach their potential.
Did you ever doubt yourself while creating the organization?
First, let me say that there have been thousands of families and hundreds of organizations and individuals who have lifted me and the Global Down Syndrome Foundation up in our mission to dramatically improve the quality of life for people with Down syndrome. I’m not particularly religious, but I honestly feel blessed to call so many people my close colleagues, friends and mentors.
Second, absolutely I had self-doubt. Not because there was any question that people with Down syndrome deserve better than what they have from the research and medical care field, but because I knew we needed to change long-standing behaviors at the national level. One area of self-doubt arose from a surprise corner – other non-profit organizations who seemed to not want us to succeed. Over time I realized that, like with the cable industry, as a newcomer we simply had to prove ourselves and earn people’s trust. I would say, though, there are still some outliers and I think we all need to accept that fact that there will always be some naysayers to keep us on our toes.
The second big area of self-doubt stemmed from our work with Congress to address the fact that despite being the leading cause of developmental delay in the US and the world, Down syndrome is one of the least funded genetic conditions by our National Institutes of Health (NIH). Without research we cannot have evidence-based medical care and without excellent medical care and good health our children and adults will not be able to reach our potential. Today we are proud that because of our scientific and humanitarian arguments and perseverance our champions in Congress and at NIH, we have seen fit to triple the Down syndrome research budget. However, it took us nearly a decade and many pokes in the eye to get to this point and we still have a long way to go before we fund out of the category of “one of the least funded.”
What 3 action steps can you share with women that are looking to follow their passion in business?
Have a sound, executable 3-5 year plan starting at where you want to be and working backwards to where you are now.
Sustained, unrelenting pressure gets results but be flexible if something is not working. If something is not working assess, find a new way and in the meantime never stop the sustained, unrelenting pressure for the results you want.
Everyone is your audience! I learned that from the cable TV industry. Don’t take anyone for granted. You have to earn the support of people with Down syndrome and their families, the government, the other non-profit organizations in this space, the philanthropists, the scientists and medical care professionals, the celebrities. It is exhausting but if you find the narrow areas that can make just several of these audiences happy and supportive it’s a home run.
What was a moment you seemed to have failed but you now recognize it was a blessing?
I think we have had some failures in terms of the timing of our success in certain areas (it took a lot longer!). And in the non-profit world I don’t think I am alone in saying that we have had some false starts around building a strong, passionate long-term team. I don’t particularly look at these failures as blessings but rather as learning experiences that then we apply to our future work and strategy.
How do you bring community into the work you do?
We bring community into the work we do every day. Global has programs and events for people with Down syndrome and their families. Those programs and events attract over 400 volunteers a year. Our annual Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world, attracts 250 volunteers! We have 120+ local Down syndrome organizations who are Global members that we work with on various initiatives including educational and employment. In addition, we partner with broad-based community partners such as the Colorado Rapids, Colorado Ballet, Denver Broncos, Denver Broncos Cheerleaders, University of Denver, Regis University, CU Buffs, and CU Boulder Sigma Nu.
We publish an award-winning magazine, Down Syndrome WorldTM, that profiles self-advocates and champions from different sectors in addition to important information on research and health care. We constantly seek input from our families and/or local Down syndrome organizations – directly, through surveys and through focus groups. And we update all of our constituents, including our donors, through a monthly e-newsletter, press, and other communications.
Do you incorporate gratitude within emails? Share kindness when meeting with clients? Explain:
Absolutely we show gratitude in every email and voice message – certainly at every meeting. Whether it is $5 or $5K we understand that a donor is choosing Global and our children and adults with Down syndrome and for that we are deeply and truly grateful. Whether someone signs one petition or flies all the way to Washington DC to help us lobby; whether someone simply wants to get their child with Down syndrome an excellent general medical exam or is struggling with highly complex issues that only our medical center has the ability to deal with; we are grateful and express that gratitude to the important people who make up the fabric of our Global community.
When we meet with constituents, we often give examples of collaboration, and how one stand-upper can make all the difference for a child or adult with Down syndrome. And by the way, that stand-upper may have Down syndrome…
How can FEMS find you and follow your journey?
FEMS can find us at www.globaldownsyndrome.org and follow us on social media at @gdsfoundation on Facebook and Twitter and @globaldownsyndrome on Instagram. Another great way to follow us is to sign up for our monthly e-newsletter or email communications and to subscribe to our Down Syndrome WorldTM magazine.
ABOUT MICHELLE:
Michelle Sie Whitten is the President and CEO of the Global Down Syndrome Foundation (Global). She co-founded the organization in 2009, after giving birth to her daughter Sophia, who has Down syndrome.
Global is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy.
Global’s primary focus is to advocate and fundraise for its four affiliate organizations with hundreds of scientists and clinicians on groundbreaking Down syndrome research and improved medical care. Global supports 12,000 community members through its health and wellness programs, provides medical care to over 1,700 patients with Down syndrome from 28 states and 10 countries, and has over 200 individual and organizational members. Global publishes the award-winning quarterly magazine – Down Syndrome World TM and organizes the largest Down syndrome fundraising event in the world – the Be Beautiful Be Yourself Fashion Show.
Michelle is married to Tom, a British curator of Chinese contemporary art and they have two adorable kids, Sophia (who happens to have Down syndrome) and Patrick.