The Wilmington chapter of the Cystic Fibrosis Foundation will join forces with the local surfing community Saturday, Aug. 8 to raise more than $100,000 to fight cystic fibrosis, a disease that does not receive federal funding for its research.
The fourth annual Pipeline to a Cure East gala, held at the Country Club of Landfall, generates funds for CF medical treatments as well as research to develop more treatment options, and, someday, a cure.
Eileen McConville, the event co-chair, said the foundation’s research toward treating CF’s symptoms has prolonged the lives of patients like her daughter Katie Reisinger.
“When Katie was born, we were told … she probably wasn’t even going to make it out of high school. Now she has a 1-year-old, and she’s married, and a professional,” McConville said. “When you give birth and your child has an illness that’s deadly, it’s a really scary time … but the CF Foundation gives us hope, and that’s why it’s easy to support them.”
Besides raising money, the event also highlights the connection between surfing and the management of cystic fibrosis, a genetic disorder that causes a thick buildup of mucus in the lungs. In recent years, doctors in Australia observed people afflicted with CF who surfed had better lung function than those who did not. Inhaling the salty mist helped clear their lungs, doctors documented. The discovery initiated the development of a hypertonic saline drug now used by patients worldwide.
An oceanic theme will unite all aspects of the gala. Live auction items include a two-night stay at Frying Pan Tower — a former Coast Guard tower turned bed and breakfast located 30 miles offshore — and a catered dinner cruise on a private 60-foot yacht.
The live auction’s signature item is a surfboard designed by local shaper Ian Balding. The board is custom designed to represent the words “65 Roses,” a phrase made famous by a 4-year-old child with cystic fibrosis who mispronounced the name of his diagnosis. The board will be revealed right before the auction, and in past years the unveiling has incited thrilling bidding wars.
“I don’t think [Balding] is going to show it to anybody until that night. … It always comes in a case,” McConville said. “It’s a big reveal and everybody goes nuts.”
While the event’s name further emphasizes the surfing connection by conjuring images of Hawaii’s Bonzai Pipeline, one of the most well-known surf breaks in the world, it also refers to the drug development pipeline, McConville said.
During the 2015 event, University of North Carolina Health Care’s Dr. James Yankaskas will speak about the latest developments in cystic fibrosis treatments. McConville said while the information is enormously important to the many CF parents in attendance, it also reminds every person at the gala the medical advancements their donations make possible.
“People are like, ‘Wow, somebody in this room who has a child with CF benefitted because I made a donation,’” McConville said.
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