On Saturday, the supermodel will lead the catwalk at Global Down Syndrome Foundation's 6th Annual "Be Beautiful Be Yourself Fashion Show" in Denver. The largest single fund-raiser for Down syndrome in the nation, the show has raised nearly $8 million for life-changing research and medical care for those living with the genetic condition.
The national spokesperson for Global Down Syndrome Foundation, Johnson tirelessly advocates for the cause — one that is very personal to her. Her first cousin, with whom she is very close, has Down syndrome, as does her niece, Natalie Fuller.
It didn't take much convincing to get Johnson on board as the national spokesperson, she admits.
"I've always been very supportive, particularly with my sister in her journey to get the best for Natalie, and I was like, 'This is my time to actively participate in bringing awareness to people that have Down syndrome,'" she said. "This event in Denver really transforms these kids and young adults' lives in the way of their self-esteem."
But this year's show will include one important distinction where Johnson is concerned — during the fund-raiser, she will be honored with the Quincy Jones Exceptional Advocacy Award.
The honor is twofold for Johnson, who is touched to be recognized for her work on behalf of those with Down syndrome, as well as receiving the award named after someone she deeply respects.
"He's just an exceptional human being, and through Global Down Syndrome Foundation, I've become closer to him," she said of Jones, her longtime friend. "It means the world to me... it really does. It's quite an honor."
Johnson won't be the only A-lister in attendance at the event, though. Celebrities such as award-winning actor, John C. McGinley (a past Quincy Jones Award recipient), Denver Broncos punter, Britton Colquitt, and many other stars will be sharing the stage at the fashionable fete that — in addition to the fashion show — includes a VIP reception, a gourmet dinner and a luxurious live auction.
"It's just this community of people and doctors and researchers and organizations dedicated to bringing out the full potential of people that have this condition of Down syndrome," said Johnson, citing specifically the joy of working alongside self-advocates, Tim Harris and DeOndra Dixon.
Not only is the show of force touching, assures Johnson, but it also much needed.
Each year in the United States, one in every 691 babies is born with Down syndrome. But despite more than 400,000 people nationally and millions globally with the condition, it remains one of the least funded genetic conditions by the National Institutes of Health.
It is Johnson's hope that with Global Down Syndrome Foundation, she can help change that, since so little is still known about the condition. "There's a remarkable disparity between children of color who get Down syndrome — life expectancy is age 23 — and non-black children with Down syndrome — life expectancy is 63 years old," she said.
"So, is this part of something that we don't know? Because there's this whole dynamic of health issues and social services you need for these children... this is a journey I've been on with my sister."
The model and advocate is thrilled that Global Down Syndrome Foundation is starting to receive more grants from the United States government and funding organizations. More funding, she underscores, heightens awareness.
"I realized by being around these adults and children with Down syndrome that some of them can speak seven languages, some can play every musical instrument. It's just amazing this potential that everyone has overlooked," she said. "I think it's our responsibility as human beings that everybody reach their full potential."
And despite a packed agenda filled with her own luxury lifestyle brand, a memoir being published with Simon & Schuster early next year and a possible memoir-based movie in the works, Johnson doesn't plan on easing up her Down syndrome advocacy any time soon.
"It's amazing. I tell you, I think I get more out of it than the kids and the young adults with Down syndrome get. It just fills my heart," Johnson shared. "It really does."
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