When people in Ascension Parish want to raise money for a good cause, the tried-and-true formula for a fundraiser is a band people can dance to and some jambalaya.
So when Sarah Eastridge was diagnosed with cystic fibrosis as a baby in 1998, her family began battling the disease not only with medications but with a vow to overcome a void of awareness and funding for research.
Her grandfather, David Eastridge Sr., enlisted the help of friend and local musician Cody Marchand to put on a benefit concert, and another friend, Chad Decoteau, organized a jambalaya cook-off. It was the beginning of what is now the two-day Swamp Pop Music Festival, a summer tradition for about 6,000 attendees.
“Swamp pop music is very popular in this area,” said David Eastridge Jr., Sarah’s father. “Everybody at weddings and things like this, that’s the bands that play.”
It’s the kind of music “you can boogie to,” said Joan Bercegeay, a Gonzales resident. On Saturday, couples danced to saxophone-heavy renditions of Cajun tunes and hits from the 1950s and ’60s, while others sampled jambalaya from the cook-off held earlier in the day.
“It’s community and charity,” said Beth Frederic, who has attended with friends for a few years.
Proceeds from ticket sales go toward cystic fibrosis research, said Erin Achberger, executive director of the Baton Rouge chapter of the Cystic Fibrosis Foundation. The foundation provides funds to pharmaceutical companies to develop new medications, she said.
About 300 of the 30,000 Americans who have cystic fibrosis live in Louisiana, Achberger said. It is a genetic disease, so even more people are carriers.
But Sarah Eastridge, who grew up in Donaldsonville and is a 17-year-old student at French Settlement High School, said not enough people know about the disease — a result of gene mutations that cause mucus to build up in and damage the lungs and pancreas.
“It’s definitely something that people don’t understand and people don’t really know what’s going on,” she said. “There’s times when I’m coughing in public and people make faces. I’d rather people ask me what’s wrong than staring.”
Eastridge brings an inhaler with her everywhere and does daily breathing treatments. There is no cystic fibrosis care available in the Baton Rouge area, so she and her father make regular trips to see doctors at Tulane University in New Orleans.
“I’m a little different than everyone else, and I’m going to be sicker than everyone else, and I can’t party and do normal things that 17-year-olds do,” Eastridge said. “But I can still have fun and have friends and stuff like that. CF does not define me; it’s just part of me.”
“They’re all born that way, like with a sixth sense,” Achberger said of the patients she’s met in her 14 years with the local Cystic Fibrosis Foundation chapter. “They understand who they are. ... They have a lot of fight in them.”
Recent medical advances are another source of encouragement, allowing some patients to live into their mid-30s, Achberger said. In the 1950s, children with the disease didn’t live to attend grade school, she said, and the median life expectancy 20 years ago was 18 to 20.
“When my daughter was born, we were facing the possibility of her not even making it into her teen years,” David Eastridge Jr. said. “That’s a terrifying thing when your daughter is 5 months old and you’re told she may not make it through high school.”
The FDA last week approved Orkambi, a drug that corrects the two most common gene mutations — which Sarah Eastridge has — that cause cystic fibrosis in up to 50 percent of patients, Achberger said. A similar older drug, Kalydeco, works in 2 to 3 percent of patients.
Eastridge said advances like that are exciting but so is working alongside numerous family members and volunteers every year at the festival.
The event draws many repeat attendees, like Frederic.
“A lot of the small communities in Ascension come together,” she said. “It’s just good to get together. Everybody’s so busy, we don’t get to see people from outside our community.”
“A lot of this is Ascension Parish,” said Jan Rouyea, of Gonzales, as older couples arrived with lawn chairs and mothers bounced babies to the beat of the music.
“People can’t realize what that means to us,” David Eastridge Jr. said. “It has given my daughter hope.”