Bicycle event starting in Holliston raised nearly $270K to fight cystic fibrosis

HOLLISTON — Adam Sachs, a financial planner from Ashland, first got involved in the Massachusetts Cycle for Life back in the beginning, when the event benefiting the Cystic Fibrosis Foundation was simply called Cycle for Haylee.

"I didn't own a bike and I didn't really like cycling, (but) I decided to do it because it felt like a good cause," said Sachs, who counted co-founder Matthew Varrell as a client. "I don't think anyone on our team are really big cyclists, but it's a great cause and we have been able to raise a lot of money over the years."

'A good cause': Cystic fibrosis fundraisers are leading to medical advances

Saturday marked the 25th year the event was held, as nearly 200 riders braved the rains and hilly terrains to raise nearly $270,000 for the Cystic Fibrosis Foundation. The ride came in 12-, 30- and 65-mile increments — depending on the skill and ambition of the cyclists — and traveled through Holliston, Sherborn, Natick, Wellesley, Dover, Medfield, Millis, Medway, Hopkinton and Ashland.

"We like to say that we are on the road for a cure, and that road goes through Holliston," said Terry Waite, associate executive director of the Massachusetts/Rhode Island chapter of the Cystic Fibrosis Foundation.

Matthew and Amy Varrell started the fundraiser in 1998 after their niece, Haylee, was born with cystic fibrosis. The Cycle for Haylee, which covered 25 miles, drew 45 riders and raised about $8,500.

A life-threatening disorder

Cystic fibrosis is a life-threatening disorder that damages the lungs and digestive system by causing fluids such as mucus, sweat and digestive juices to become thick and sticky, according to the Mayo Clinic. This plugs up key tubes, ducts and passageways.

Symptoms can include cough, repeated lung infections, inability to gain weight and fatty stools. There's no cure, although treatments can ease symptoms and reduce complications.

Cystic fibrosis affects about 35,000 people in the United States alone, according to the Centers for Disease Control and Prevention.

"When the ride first started in 1998, the life expectancy of someone with CF was in their 20s," said Waite. "If someone is born with CF today, they have a life expectancy into their 50s."

Key developments in recent research include the recent introduction of a drug called Trikafta, which was approved for use in 2019 and is applicable for treatment in 90% of CF patients.

Over the years, the Ride for Haylee and Cycle for Life have raised nearly $4 million for cystic fibrosis research. The Massachusetts event has become so successful that it has inspired dozens of other similar events throughout the country at different chapters for the Cystic Fibrosis Foundation, growing the fundraising umbrella and raising awareness of the disease.

Jenna Reed, sister of Haylee Reed, also has cystic fibrosis. She and her sister are volunteers every year, part of a team of more than 70 that help organize the ride.

"I've been mostly healthy throughout my life, but during my junior year of high school, I spent most of the year in the hospital," Jenna Reed said. "During my senior year, I started taking a new drug and it has transformed my life."

Paying it forward

Reed is now a senior at Bridgewater State University, and aspires to become a special education teacher.

"I think growing up in this environment and getting so much support from people had made me want to help other people in my career," she said.

Cycle for Life volunteers are organized by Patty Osten, a physical therapist who has been working with cystic fibrosis patients for 45 years.

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"When I first started, the average life expectancy for someone with CF was 12 years old," she said. "Today, thanks to all the work we have been doing with fundraising, that is now up into the 50s. When you see that kind of progress being made, it's easy to come back every year."

In 2018, Sachs' fraternity brother Mike Furey died of cystic fibrosis at age 43. That year, Sachs' fundraising team won a contest promoted by John Harvard's Brewery & Ale House in Framingham that allowed them to name a beer.

"We called it 'Fureyous Resolve' and I was able to show it to his mother, Nora, and she told us that it was perfect, it was exactly who he was," said Sachs, who works at — and rides for — Centinel Financial.

The event is supported by numerous local and national businesses. It started and was  hosted by Our Lady of Fatima Shrine in Holliston. Landry's Bicycles, which has eight stores and marked its 100th year in business this year, provides last-minute mechanical fixes and adjustments. Chick-fil-A offers sandwiches to riders once they complete their routes.

For Jenna Reed, the event has been taking place her entire life, and has become a family tradition for her and her sister.

"It is so encouraging, I was just telling my friend that people say that CF is so difficult to live with, but when you have an event like this, it makes it easy," she said.

This article originally appeared on MetroWest Daily News: 25th Cystic Fibrosis Foundation charity bike ride in Holliston