Deadly Genetic Disease Has No Cure

NEW YORK (CBSNewYork) — On Sunday, thousands of people got out their running shoes in a hope to end the disease at the annual Great Strides Walk in Lower Manhattan.

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Alex Statell, 4, suffers from cystic fibrosis. She has the energy and spirit of most kids her age, but her life is much more challenging than most.

Her disease is genetic, and causes the body to create an extremely thick mucus than can clog the lungs and prevent the body from making necessary enzymes.

Alex has to take 20 to 30 pills a day, and does physical therapy every morning and night in order to stay alive.

“Nobody in our family ever had this disease,” said her mother, Lynn Statell. “I mean, it took us by surprise.”

But the annual Great Strides Walk raises funds in hopes that someday, Alex and others like her will be cured. CBS 2 and TV 10/55 are sponsors of the event, and CBS 2’s Lonnie Quinn joined the 2,000 walkers on the 2 1/2-mile route, raising funds to promote awareness and further research efforts.

“Years ago, people were diagnosed they would only live ’til 18 years old,” said Lynn Statell. “Now, people are living to 30 or 40 years old. It’s amazing.”

With 150 teams coming together for the event, this is the organization’s biggest fundraiser of the year, with a goal of raising $1.25 million. Ninety-four cents of each dollar goes directly toward research.

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“The only way we’re going to find a cure is if we raise the dollars,” said Martine Denis of the Cystic Fibrosis Foundation.

Chloe Shiffman, 8, is a carrier of the disease.

“We need a cure for cystic fibrosis,” she said.

Chloe’s uncle died at 16 from cystic fibrosis. Her mother, Melissa Shiffman, also has the disease and continues to defy the statistics.

“I am proof,” she said. “I’m 39. I’ll be 40 next month.”

More than $300 million have been raised since Great Strides started back in 1989.

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