How much do you know about Down syndrome? Although 1 in every 700 babies is born with it, Down syndrome is the least funded major genetic condition by the National Institutes of Health, despite being the most frequent chromosomal disorder.
One woman is bringing together thousands of people to change that. They’re increasing resources, funding research, and working tirelessly to change how people perceive kids with Down syndrome.
Sophia, Sam, and Shelby: three teens who love music, dancing, and of course, talking on the phone. Not so different from other kids, except these three are growing up with Down syndrome.
“I like to break dance and, as you can see, I like to eat a lot,” said Sam Levin, a high school senior.
“You like, like dancing?” said 17-year-old Shelby Martinez.
“Hanging out with my boyfriend,” said 17-year-old Sophia Whitten.
When Sophia’s mom found out her daughter would be born with an extra copy of chromosome 21, she didn’t know much about Down syndrome.
“I had never met a person with Down syndrome,” said Michelle Sie Whitten, co-founder, president & CEO of the Global Down Syndrome Foundation.
But Michelle found out quickly there was a void in help for kids like her daughter.
Michelle co-founded the Global Down Syndrome Foundation—now the nation’s largest source of funding for Down syndrome-related research, medical care and programs. Global has donated more than $32 million to establish the first Down syndrome research institute, supporting over 400 scientists and 2,000 patients.
The program Michelle is most proud of is Global’s Be Beautiful, Be Yourself Fashion Show. It's the largest Down syndrome fundraiser in the world, raising, to date, $20 million.
“I get to wear cool clothes,” said Sophia.
“They bring everybody to their feet every year, every time,” said Michelle.
Giving these kids the confidence and the knowledge that they can do—and will do—anything they want to.
“Down syndrome is actually a small part of me and never get to define me,” said Sophia.
People with Down syndrome have a radically different disease spectrum. Their chances of getting Alzheimer’s and certain leukemias are high, while the likelihood of getting a solid tumor or suffering a heart attack is low. That’s why more research is necessary to understand the impact of Down syndrome.
Global has a membership of over 150 Down syndrome organizations worldwide.