Last Saturday, September 21, around 150 cyclists gathered in Middletown, Conn., to take on the daunting task of biking either 25 miles or, for bikers who wanted even more of a challenge, 50 miles.
The longer path took riders on a loop from Middletown, down to North Branford, right above the Long Island Sound, and back up through Wallingford to the starting point. The shorter path stopped at Wallingford before returning riders back to Middletown.
No matter the route, cyclists passed themed rest stops, loudly cheering spectators and volunteers, beautiful scenery, and the Choate Rosemary Hall campus. But this event wasn’t just a gathering for hardcore fitness enthusiasts. It was part of the nationwide Cycle for Life event organized by the Cystic Fibrosis Foundation, a non-profit organization dedicated to helping the 30,000 Americans who suffer from cystic fibrosis.
Cystic fibrosis is a hereditary disease that attacks the patient’s lungs and digestive systems. It impairs the body’s ability to properly produce mucus, so the mucus produced by someone with cystic fibrosis is much stickier and thicker than normal. Patients have a harder time coughing mucus out of their lungs, which often leads to lung infections and breathing impairment. Even after decades of research, a cure for cystic fibrosis remains elusive, and most people suffering from the disease do not live beyond their early 40s.
To combat this disease, the Cystic Fibrosis foundation has been helping scientists and doctors increase our knowledge of the condition. According to Ms. Melanie DiNicola, Senior Development Director for the Cystic Fibrosis Foundation Connecticut Chapter, “Almost all of the medications that are on the market right now for cystic fibrosis have been brought to fruition through the cystic fibrosis foundation. So, what we’re doing is really important to help people live longer and healthier lives with CF.”
The cycling event, which has been held annually for the past 20 years, contributes significantly to funding the foundation’s activities. Cyclists who sign up for the event are required to donate a minimum of $175 to the foundation, but most cyclists pay much more. The average donation hovers around $600. The Connecticut branch has raised $57,739 in total this year.
Much of the event’s success can be attributed to a group of dedicated volunteers working behind the scenes. Ms. DiNicola explained, “The cycle event has a lot of moving parts to it, and it’s very complicated because we need to get the routes approved by the state and then by the towns that they go through. And then, we need to get the police support that’s necessary, and then we need to have about 100 volunteers to help us with all the different rest stops, and then the set-up, the breakdown. There’s a lot to the cycle event. It takes about a year of planning.”
The people who helped organize this event come from many backgrounds, but they share a determination to make a difference in the fight against cystic fibrosis. Ms. DiNicola herself has a daughter who suffers from cystic fibrosis. “She will be 24 next week,” said Ms. DiNicola, “and she’s been fighting the disease all her life.” A personal connection to the disease drives Ms. DiNicola and other volunteers at the organization.
The organization was founded in 1955 by a group of parents with children suffering from cystic fibrosis. “When the foundation was created 50 years ago, people with CF weren’t expected to live to grade school,” Ms. DiNicola said.
Using an innovative business model called venture philanthropy, the organization was able to raise millions of dollars in funds to pay for pharmaceutical research to extend the lifespan of patients with cystic fibrosis. In 2017 alone, the foundation raised $3.5 million toward the cause.
