The Haley’s Team Twilight 5K, staged Saturday evening at the McClellan Medical Mall, sends thousands of dollars each year to the University of Alabama at Birmingham to support its ongoing cystic fibrosis research.
Randy Bright and Rich LaMonica began the race seven years ago in honor of Bright’s stepdaughter Haley Conroy, who was diagnosed with cystic fibrosis when she was about a year-and-a-half old.
"When Haley was diagnosed, the lifespan for her was upper teens and early twenties," said Brandi Bright, Conroy's mother. "What kept us going all along is there was research, but they have to have funding for it.”
Conroy, now 18, has just graduated from Sacred Heart Catholic School and plans to attend Gadsden State Community College in the fall. Ultimately, she said, she’ll transfer to Jefferson State Community College to finish up her training to become a veterinary technician.
Conroy said it can be sort of weird to have hundreds of people running around wearing T-shirts with her name on them, but mostly she’s grateful.
“It’s just kind of amazing that all these people are out to support me — and most of them I don’t even know — for me, and other patients with cystic fibrosis. It’s just kind of amazing.”
The disease affects the lungs and digestive system of about 30,000 children and adults in the United States, according the Cystic Fibrosis Foundation. Due to a defective gene and its protein product, the body produces a thick, sticky mucus that can clog the lungs and obstruct the pancreas.
Now that Conroy is older, she is able to help with the race, securing sponsorships and doing other behind-the-scenes work.
Her mother said the idea for a twilight race came from candlelight vigils held at other fundraisers by the Cystic Fibrosis Foundation in honor and memory of cystic fibrosis children. Haley's Team Twilight 5K, in which many participants run with glow sticks, combines the vigil and the fundraiser.
Twelve-year-old Abby Nunnelly, wearing a bright orange skirt and necklace made of glow sticks, was running the race for the fourth time. With friends who have cystic fibrosis, the cause is also important to her.
She runs in many races, but she said she likes coming back to the Haley’s Team event because it’s cooler in evening.
“I like it because I like going around the fort and looking at the stuff,” she said, noting the fun of running by the “doggies” at the Auburn canine training center.
The 5K is one of 10 chosen along with two half marathons as part of the Anniston Runners Club Grand Prix, a group of races that gives members more points for finishing closer to the front of the pack.
Eric Burrage, Grand Prix director for the club, said members vote on which races to include in the system and tend to vote for races they have run before and enjoyed. Haley's Team is the only twilight race on the Grand Prix.
Mike Michelson, 66, is running as part of the circuit, but is also happy to support such a good cause. He said he doesn’t know Haley, but he’s worked with both her stepfather and grandfather. “I like the idea of doing something to help them,” he said.
A total of 272 people ran in Saturday’s race. Brandi Bright said participation in the race peaked last year with 325 runners. On average, the event raises about $10,000 each year to further cystic fibrosis research.
The proceeds from Saturday's race will be donated to fund ongoing research at the UAB Cystic Fibrosis Center, where Conroy has been a patient. Some of the work that has come out of the center, said Brandi Bright, has been a game-changer for a small percentage of cystic fibrosis patients, including her daughter, and there are many more people to help.
Dr. Steven Rowe, an associate professor of medicine and researcher at the center, said UAB had a significant role in research and trials for ivacaftor, a medication that mends a broken protein found in about 4 percent of cystic fibrosis patients with a particular gene mutation. Ongoing research, he said, seeks to find ways to make the medication effective on similar mutations and to find ways to combine it with other medications to help patients with other forms of the disease.
“It’s really, really exciting,” he said.
Donations of all sizes to the research center are more than welcome, Rowe said.
“We definitely work with donors both large and small to facilitate research and expand it as fast as possible,” he said.
Staff writer Patrick McCreless: 256-235-3561. On Twitter @PMcCreless_Star.