LA GRANGE – What started out as a post 5k family and friends get-together at a bar, has evolved into a fundraising event benefiting a local 4-year-old and the Cystic Fibrosis Foundation.
“It all grew very organically in the beginning,” said Matt O’Connell, who organizes and runs the event with wife, Kellene.
He said that even as the March fundraiser has grown in recent years, it still has the “grass roots” feeling.
“We’re just focused on getting as many people in the room, telling our story and showcasing all the great things the organization does,” he said.
Shamrockin’ For A Cure will be an evening event highlighting the couple’s son, Brady, and cystic fibrosis research.
When Brady was born March 13, 2009, he was diagnosed with cystic fibrosis – a life-threatening disease affecting the lungs and digestive system. Since then, the soon-to-be 5-year-old has come up with his own catch phrase: “We’re going to kick CF’s butt,” Matt O’Connell said.
Until this past month, Brady went a year and a half without being hospitalized or on any antibiotics, according to Matt O’Connell. But he said since returning home from a five-day hospital stay in February, Brady has six IV treatments a day along with four vest treatments, where a vibrating vest helps remove fluid in Brady’s lungs.
“We’re looking forward to getting on another stretch [without hospital visits],” the La Grange resident said, adding that even without having to be in the hospital, Brady still will be on about three vest treatments a day.
Along with sharing their story, Shamrockin’ For A Cure also is about representing the CF Foundation’s work.
In 2012, a drug called Kalydeco was approved and is now being used to alleviate symptoms of CF for 4 percent of CF patients in the United States. By 2020, about 90 percent of CF patients will be using the same pill, but Brady is a part of the remaining 10 percent without a timeline, according to Matt O’Connell.
“[The funds] we get go towards research to hopefully accelerate that timeline,” he said.
Organizing the St. Patrick’s Day-themed event began last July, according to Kellene O’Connell. Kellene and a group of 20 close friends work on the committee together.
After a mini winter break, the group resumed work in January and is now about two weeks away from the event – which would not be possible without family, friends and the community, said Kellene O’Connell.
While raising money for the foundation is important, Kellene O’Connell said they just want to tell their story and create awareness of the disease.
“There’s hope and that’s what is so exciting about it,” Kellene O’Connell said. “We have to wait the longest, but we just want everyone to know we’re not going to stop until every kid is cured. That’s our motivation.”
If you go:
What: Shamrockin' For A Cure
Where: Countryside Banquets, 6200 Joliet Road
When: 7 to 11 p.m. March 7
Tickets: $60 per person; which includes beer, wine and food