Local Cystic Fibrosis Nonprofit Holding Dueling-Piano, Awards Event

Provided by the Bucks County Cystic Fibrosis Alliance:

A file photo from a dueling piano event.

Cystic fibrosis survivor Anna Payne never envisioned a life past 17, let alone co-founding a nonprofit that hopes to help others like her battling the progressive, genetic disease.

“We’re going to stand out by trying to raise awareness about the link between CF and colon cancer,” said Payne, a Middletown Township supervisor whose life changed again when she was diagnosed last year with stage IV colon cancer. “There’s a lot of us whose lives are impacted by the disease, and they’re not alone.”

The Bucks County Cystic Fibrosis Alliance is holding a kickoff fundraiser Sept. 16 at 7 p.m. at The Fuge in Warminster Township to raise awareness for cystic fibrosis and colorectal cancer.

About 40,000 people in the U.S. have CF – roughly 1,400 in Pennsylvania – and another 1,000 are diagnosed each year.

Life expectancy has risen to 53 over the years with the help of new treatments and medical advances, but cystic fibrosis survivors are at higher risk for another “silent” killer.

They’re five to 10 times more likely to develop colorectal cancer, the nation’s third-leading cause of death, because of a mutation in the cystic fibrosis transmembrane conductance regulator gene. More research is needed to figure out why.

That’s where you come in. Tickets to the event are $65 each, with most of the proceeds being donated to the Cystic Fibrosis Foundation, Cystic Fibrosis Research Institute and Emily’s Entourage.

Attendees will take in a dazzling dueling-piano performance and awards ceremony honoring fierce advocates like Kim Galie, the founder of Wishes and Dreams for Cystic Fibrosis.

Pressed into action by their daughter Victoria’s diagnosis at three months, the family has helped raise more than $1.6 million for CF research since 2013.

“While we are grateful for the advancement that medications like Trikafta have made in Vicki’s life, we are painfully aware that it is not a cure and does not help all with CF. We won’t stop until there is a cure,” Galie said.

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