WOLFE COUNTY, Ky. (LEX 18) — Getting together on Labor Day is a recent tradition in the Red River Gorge. It’s a part of the Labor Day Fundraiser Party to benefit the PFIC Network.
The event is in its third year, but it’s one of many ways the local community has come together to support the PFIC Network.
“We've been raising money for the charity PFIC Network here in the community for about six years,” said executive director Emily Ventura.
PFIC stands for Progressive Familial Intrahepatic Cholestasis. It’s a rare genetic liver disorder that begins in infancy or early childhood, and it can lead to liver failure. Not only does Ventura head the PFIC Network, she’s very familiar with what the disorder does.
“Our daughter was diagnosed when she was 5 months old,” Ventura said. “At that time, because the disease is so rare, we had no connection, no support, no education, or really anybody who understood what we were going through.”
The disorder is rare, affecting one in 50,000 to 100,000 people worldwide.
“But we did have our local community here,” said Ventura.
That community support is what makes days and events like this so special. Ventura had a handwritten note saying, "literally, everyone pitches in.”
“To have their support throughout her journey and our journey personally and then to have them support the kind of foundation work that we're trying to do to make an impact on those who suffer from PFIC worldwide, it's just it's incredible," Ventura added. "It's life changing. It's so meaningful for us, and it really does help us kind of bring hope to not only our family but others around the world.”
The Labor Day Party fundraiser began Monday with a disc golf tournament. Later in the day, a cornhole tournament kicked off, before an evening of fun, food, and music.
You can learn more about the PFIC Network here.
