Musical event raises funds for National Marfan Foundation

February 27, 2011|By JULIE E. GREENE |
  • Daniel Speck, 12, of Knoxville, Md., performs Sunday during a fundraiser he organized for the National Marfan Foundation. Several people performed music at St. Mark's Lutheran Church in Wolfsville, Md., as part of the event.
By Audra Haddock Martenot

WOLFSVILLE, Md. — A tall young woman, Clare Whittaker said people ask her if she plays basketball or if she is a model.

Whittaker, 22, of Silver Spring, Md., told the audience at St. Mark’s Lutheran Church in Wolfsville on Sunday afternoon that she couldn’t play sports due to Marfan syndrome.

Since she didn’t like sports, that was “kind of a relief to me,” she said.

Instead, the syndrome helped her discover her interest in science, said Whittaker, who earned a bachelor’s degree in cell biology in genetics in December.

Whittaker was one of several people who spoke Sunday about how Marfan’s affects them or a loved one. In between sharing their stories, several people performed music at the fundraiser organized by 12-year-old Daniel Speck, of Knoxville, Md.

Daniel, who also has Marfan’s, played the piano for the concert.

He said he got the idea for the fundraiser last year when he realized many of the people he knows with Marfan syndrome perform music as a hobby.

“I thought it was a really nice turnout,” Daniel said. About 120 people attended.

Amy Speck, Daniel's mother, said the event raised more than $3,000 for the nonprofit National Marfan Foundation.

Marfan syndrome affects connective tissue and can result in features such as an enlarged or bulging aorta, severe nearsightedness, long arms and legs, a chest that sinks in or sticks out, and long, thin fingers, among other possible features, according to an event flier.

Rob Berklite, of Centreville, Va., told the audience that his daughter, Jessica, 12, has a chest that sinks in so she had to have a bar implanted to keep her rib cage from collapsing.

The distance between her sunken breastbone and her spine had grown to 1 to 1 1/2 inches, so the bar was necessary to prevent her rib cage from crushing her heart and lungs, her parents said after the concert.

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