Quick, what’s the most under-funded genetic disease in the world? Which group of people is routinely detected and eliminated before birth, with one country (Iceland) boasting that it has “eradicated” the disease that way?
It’s Down’s Syndrome. But not everyone is taking that fact lying down. The Global Down Syndrome Foundation is:
A public non-profit 501©(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy. Formally established in 2009, the Foundation’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Since Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.
Actors Jamie Foxx, Hilary Swank, Marisa Tomei, and Laura Dern, music legend Quincy Jones, and football legend Peyton Manning joined dozens of other celebrities who support the Global Down Syndrome Foundation. Its annual headline event is the “Be Beautiful Be Yourself Fashion Show.” It fights the stigma and social disapproval suffered by too many people with Down Syndrome by making them the stars of a glittering runway show with the latest fashion creations.
Michelle Sie Whitten, president of the Global Down Syndrome Foundation, told People Magazine how she came up with the idea for the Show:
‘Growing up in New Jersey, I had never met anybody with Down syndrome or even in a wheelchair. Then, when I was pregnant I got a pre-natal diagnosis, I met a few kids with Down syndrome, and I was like, ‘Alright, we can do this!’ Then we never looked back….
The stereotype in my mind was a person with their tongue hanging out and a bad haircut, dressed in ill-fitting clothes,” she says. “There were terrible stereotypes in my mind, and I realized it was fabricated.”
“I wanted to take people with Down syndrome and make them models,” says Whitten. “Not only are they not the stereotype, but they’re beautiful models, and we’re going to elevate them [by having them walk the runway] with Hollywood celebrities.”
So Whitten decided to create an event that would highlight the beauty, courage, and individuality of people with Down Syndrome…. and the rest is history. The next ball is coming up on . To find out more, or support it, please visit the Foundation online.
