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Friday
Jun242011

Ann Reinking Teaches Dance to Teens with Marfan's Syndrome

COmstock/Thinkstock(NEW YORK) -- Ann Reinking, famous star of stage and screen, is focusing on a cause that's close to her heart: the fight against the negative body image associated with Marfan's Syndrome.

Marfan's is a rare genetic disorder of the connective tissues. It can affect the bones, eyes and heart; people with Marfan's usually have limbs that are disproportionately long. Long perhaps, but appealing to a choreographer like Reinking.

Dance is "one of the greatest loves on my life," Ann Reinking told ABC News. "I just fell in love, that's all I wanted to do." So she set out to highlight the beauty of being different through choreographed dance, choosing to focus on accentuating the long lines and silhouettes of people struggling with Marfans.

Reinking was a Broadway darling, blending a spunky style of power and grace that made her a star on both the stage and on the movie screen, starring in "All That Jazz" in 1979 and in "Annie" in 1982.

She is also a gifted choreographer, winning a Tony for the revival of the play "Chicago" in 1996. Through all the bright lights and big stages, she feels most accomplished when she's teaching kids how to learn and love the art of dance.

Reinking produced a documentary called "In My Hands," about working with children of Marfan's Syndrome. In the film, she teaches dance to teenagers with Marfan's Sydrome, whom she calls "exquisite."

It is a cause that is close to her heart -- her son Chris was diagnosed with the rare genetic disorder 15 years ago. It is a painful disease, and those with Marfans can undergo countless surgeries to correct their spines and vision; they also must remain constantly vigilant that their hearts don't grow too large.

"I learned my entire life to deal with it," Chris Reinking, now 21, told ABC News. "I mean like, a giraffe is not going to call himself weird because he has four legs and a long neck. That's just how he evolved and lived his entire life."

Even for someone who has lived with Marfans as successfully as Chris, there are lingering questions and insecurities that creep back.

"When you're a teenager, you don't want to look different," Ann Reinking told ABC News. "So being very tall can set you apart, not being able to see very well can set you apart … and you just want to fit in. We all do.

"These kids [have] a look that is unique and really quite beautiful ... One of the good things about accomplishing something is that it helps your self-image of yourself," said Reinking. "The human spirit is the greatest thing on earth. To be a part of that, whether it is to have people forget their problems … we're all of a sudden tangible, right there, you can truly touch it, you can truly see it's there. That's the best thing for me."

Copyright 2011 ABC News Radio

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