Help Celebrate as CF Cycle for Life Turns 20

October 7, 2017 will mark the 20th anniversary of the town of Holliston’s hosting the Massachusetts CF Cycle for Life, an annual fundraising bike ride through ten scenic Metrowest towns benefitting people with Cystic Fibrosis. Since its onset, 4,037 riders have raised $2.4 million dollars for the Cystic Fibrosis Foundation, which is committed to improving the lives of people who have Cystic Fibrosis, a condition that affects over 30,000 in the United States. Nearly every CF-specific drug available today was made possible with funds from the Cystic Fibrosis Foundation, according to its website (www.cff.org).
People who have Cystic Fibrosis are born with a mutation in a single recessive gene called the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR), which regulates the salt and fluids in a person’s body. When this gene doesn’t work, mucus can build and cause problems with breathing, cysts and fibrosis.
Cystic Fibrosis has actually affected a number of Holliston residents.
In fact, the CF Cycle for Life started in Holliston as a “Cycle for Haylee,” created by Amy and Matt Varrell, when their niece Haylee was diagnosed.
Lisa Hedrick, whose daughters Kristen (41) and Kate (30) both have Cystic Fibrosis, has been involved in the CF ride for 13 years as a volunteer. Both of her girls and her husband have ridden the route. Kedrick explains that the condition affects a lot of organs, but in her family, some advancements and funding made possible by CF Foundation have been life changing.
“The kids (Hedrick’s daughters) both have vests that they use – instead of having someone come to the house to do chest physical therapy with them, they have a vest that loosens mucous,” says Hedrick, who says thanks to the CF Foundation the girls don’t have to pay $10K for the vest. In addition, she says, the CF Foundation has funded some drugs that help immensely, and the CF Foundation acts as an advocate in Washington, D.C., pushing for various legislation. “It’s a preexisting condition,” says Hedrick.
In a new fundraising campaign celebrating the 20th anniversary of the ride entitled “Holliston Heroes – Helping to Add Tomorrows,” that is asking Holliston residents to contribute $20 in a town wide effort to raise $20,000, Hedrick says her daughters “have been an inspiration to watch as they became outstanding athletes and successful adults overcoming the many challenges that CF presented. As they get older, they spend many more hours of each day doing medications and exercising in order to stay healthy and get through our ‘Normal’ day.”
Hedrick adds that hospital stays have increased from once to three times a year, and that Kristen had to recently retire from her position as Holliston High Girls Varsity Basketball Coach in order to focus on her health.
Dennis Cordon, a rider in the MA CF Cycle for Life, also discusses his experience as the sibling to three who suffered from Cystic Fibrosis. You can read his story at https://hh20.passioncff.org/denniscfstory. He writes, “I’ve lived with CF my entire life despite not having that diagnosis myself. We need a cure. I’m sick of waiting!”
Kevin and Terry (Madame) Stewart’s granddaughter was diagnosed with Cystic Fibrosis when she was two weeks old. Despite hospitalization, the four year-old lives a happy and active life, they say, thanks to the research of the CF Foundation and the doctors at Boston Children’s Hospital.
According to the Cystic Fibrosis Foundation, although breakthrough treatments have added years to the lives of people with cystic fibrosis, the median predicted survival age is still just 40 years old.
If you would like to donate $20 to the Holliston Heroes campaign, you can do so easily at hh20.passioncff.org.
There is also still time to register for the ride. Through September 7th, registration is $35 and from September 7th to ride day, it’s $45, plus each rider must commit to raising $250. You can register at Fightcf.cff.org/RIDEMA.
The days’ extras include a breakfast and post-cycle party, as well as fully stocked rest stops, bike mechanics for minor maintenance and repair, ride marshals to cheer you along and plenty of support vehicles.
The CF Cycle for Life gets a lot of help from the Holliston Lions Club, the Lutheran Church, Fatima Shrine, the Holliston Senior Center, Congregational Church, Holliston Auxiliary Police and lots of other volunteers. If you would like to volunteer on that day, contact Patty Osten (508) 429-4653 or bostonostens@gmail.com.