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Stripping Down ALS

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By JOHN W. ALLMAN

jallman@tampatrib.com

Published: January 16, 2009

TAMPA - Most people know the name, but not the disease.

"Piece by Piece," a new campaign by the ALS Association Florida Chapter, hopes to change that by increasing public awareness of Amyotrophic Lateral Sclerosis, or Lou Gehrig's disease.

The campaign's official debut was Thursday at Joe Chillura Courthouse Square Park in downtown Tampa. Across the grass, volunteers worked in early morning cold to set up 150 mannequin torsos. Each torso bears a black T-shirt. Some have names of Lou Gehrig's victims, living and dead.

The mannequins lack arms and legs to symbolize the devastating impact of the disease, said Kamden Kuhn, spokeswoman for the Florida chapter.

ALS is a progressive neurodegenerative disease that causes victims to become completely paralyzed. The disease is gradual, however, and can slowly take away the ability to walk, speak and, finally, breathe.

"There are cancer survivors. There are heart attack survivors. There is no such thing as an ALS survivor," said Kuhn, who lost her grandfather to the disease. "That's why we think this needs a lot of attention."

The campaign was conceived by Tampa advertising agency Dunn & Co. It will stop in seven Florida cities this year.

The mannequins will be in Tampa through February. The display will be open to the public until 6 p.m., and will be in Lykes Gaslight Square Park next Thursday and Centennial Park in Ybor City on Jan. 31.

The ALS Association Florida Chapter is accepting donations for research and patient care. People wishing to give money can have the name of a loved one put on a T-shirt used in the display. Volunteers will be on hand at each stop of the campaign to provide information.

Steve Franks' name is on a shirt. The Pinellas Park resident, diagnosed with ALS in 2003, says he's "one of the lucky ones."

"My biggest frustration is that people don't know what ALS is and what it's doing to the people who have it," he said. "That's why I want to be part of this. It's going to educate so many people."

CONTACT INFO

To learn about Amyotrophic Lateral Sclerosis and the "Piece by Piece" campaign, go to www.stealingpieces.org.

To donate or sponsor a T-shirt in the campaign, call 1-888-257-1717, ext. 107.

Reporter John W. Allman can be reached at (813) 259-7915.

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