By Marc Ang
Los Angeles, CA (The Hollywood Times) 11/10/21 – I got to catch up with Michelle Sie Whitten who started the amazing “ Be Beautiful Be Yourself Fashion Show” dedicated to the special needs communities and beauties. October was Down Syndrome Awareness Month, but this Saturday, November 13th at 6:30 PM MT, the Global Down Syndrome Foundation (GLOBAL) hosts the largest single fundraiser for Down Syndrome in the world: the Be Beautiful Be Yourself, Fashion Show. This year’s virtual show will feature performances by GRAMMY® Award-winning artist and philanthropist Sara Bareilles, and pro football Hall of Fame inductee and General Manager of the San Francisco 49ers John Lynch will receive the Quincy Jones Exceptional Advocacy Award alongside Peruvian advocate and politician Bryan Russell Mujica.
The event will present 26 beautiful models with Down syndrome from eight states and three countries on the virtual runway. This year’s GLOBAL Ambassadors are Archie and Sevy Eicher, two siblings who were adopted from an orphanage in Bulgaria. The Fashion Show will also pay tribute to DeOndra Dixon, the beloved sister of Jamie Foxx who tragically passed away last year. GLOBAL is honoring her memory through the DeOndra Dixon Down Syndrome Research Fund, raising funds to address medical care and healthcare disparity for African-Americans with Down syndrome.
Tickets are $25 and will allow people from across the U.S. and the world to attend this award-winning, inspirational, and star-studded event! Tickets can be purchased HERE.
- Michelle, how did you come up with the idea for the Be Beautiful Be Yourself, Fashion Show?
It all began with a personal story. In 2003 when I was 19 weeks pregnant, I got a prenatal diagnosis that my first child, Sophia, would have Down syndrome. Right after Sophia was born, I flew to Bethesda and met with the head of the National Institutes of Health, who told me that Down syndrome was the least funded genetic condition at the National Institute of Health. He said to me, if you’re going to do one thing, that’s really going to change the lives of these children and adults create an Institute of research and medical care. One for Down syndrome doesn’t exist. A lot of other conditions and diseases have it. You don’t. Go do it.
And we did. With a very generous donation from my parents Anna and John J. Sie, we created the Linda Crnic Institute for Down Syndrome, the only academic research center in the world fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. We need to raise our own funds to support this great research. So the idea of the Be Beautiful Be Yourself Fashion Show (“Fashion Show”) was born. In 12 years, the Fashion Show has become the single largest fundraiser for Down syndrome in the world and is not only raising critical funds for our research, but it also showcases the beauty and brilliance of people with Down syndrome.
- Can you share with us Sara Bareilles’ connection with Down syndrome, even if it’s just a quick blurb? (I am not going to be able to join the virtual event)
Sara has a deep connection with the Down syndrome community. Sara’s uncle, Brian, had Down syndrome. Sara will talk about that very special relationship at our Be Beautiful Be Yourself, Fashion Show.
- What is John Lynch’s program for young athletes with intellectual and developmental disabilities?
When John was in Denver and was playing for the Broncos, he and his wonderful wife Linda, through the John Lynch Foundation, provided scholarships to student-athletes throughout Colorado, including athletes with Down syndrome. We were very fortunate to partner with John and Linda in this endeavor and award many deserving athletes with scholarships for higher education.
- In the press release, you mentioned GLOBAL sent 30K pieces of PPE to group homes. Tell us a bit more about it.
Covid-19 had a huge impact on our Down syndrome community. We lost a lot of people. For the last 18 months, GLOBAL has been leading the national advocacy efforts to save people with Down syndrome from Covid. That included sending 30,000 Personal Protective Equipment (PPE), like face masks, medical gowns and gloves, and face shields, to group homes around Colorado and the country in an effort to save lives. In addition, we immediately started offering financial support through our Covid Grants, which are funding families in critical need of food, medical care, and shelter. We continue to update the community about Covid-19, vaccines, boosters, and anything relevant.
- How does the Leukine trial help people with Down syndrome?
This is one of many exciting research news coming out of our Crnic Institute for Down Syndrome.
While the third copy of the 21st chromosome protects individuals with Down syndrome from hard-tumor cancers and congenital heart disease, it also predisposes them to certain conditions and diseases. For example, adults with Down syndrome are at a higher risk of developing early onset of Alzheimer’s disease. Despite this statistic, people with Down syndrome have unfortunately been excluded from a number of previous clinical trials. So we were very excited that just last month, our Alzheimer’s scientists and colleagues were awarded a $4.6 million, five-year grant by the National Institutes of Aging to study whether Leukine, a potential Alzheimer’s disease treatment is safe and effective in improving cognitive function in young adults with Down syndrome. I am proud to say, GLOBAL’s diligent work in DC to advocate for this underrepresented population is finally showing results. I often like to quote our GLOBAL ambassador Frank Stephens during the first Congressional Hearing on Down Syndrome Research in 2017: “We are a medical gift to society, a blueprint for medical research into cancer, Alzheimer’s, and immune system disorders.” I couldn’t have put it better.
- Michelle, will next year’s Be Beautiful Be Yourself Fashion Show be in person, or are you working towards that?
Oh, absolutely. Barring any other emergency (our community’s safety is our number one priority), we have already confirmed Sheraton Downtown Denver Hotel for the next two years. Please save your calendar for Saturday, November 12, 2022, and we hope to see you in Denver.
- What does the future look like for the Global Down Syndrome Foundation?
Gosh, there is still a lot to be done. I would say addressing the disparity of life expectancy for African Americans with Down syndrome, getting our fair share of funding from our government for research that will elongate people with Down syndrome’s lives, ensuring we as a community provides the resources and the medical care they need to live happy and long lives are few of our priorities.
B-Roll 2019- red carpet interviews
B-Roll 2018- event b-roll
B-Roll 2017- event highlights