26 and Counting
In 1997, Haylee Reed was one year of age. Diagnosed at birth with cystic fibrosis, family members mobilized. Matt and Amy Varrell, Holliston residents at that time, set out to make a difference. As a nurse, Amy could provide counsel to her sister about caring for a child with a life-threatening disease such as CF. Matt on the other hand wasn’t sure how to help. As a cyclist, he took action and coordinated the 1st of 26 rides to benefit the Cystic Fibrosis Foundation impacting research and patient care. The first Holliston ride was the seed that grew into Cycle Rides in 40 cities around the country!
This year’s ride will be on Saturday, September 30th at the Fatima Shrine. Event directors Laura Donahue and Terry Waite anticipate nearly 150 riders and 50 volunteers coordinated by local resident Patty Osten. They hope to raise a remarkable $200,000 to support the mission of the Foundation in search of a cure for cystic fibrosis.
Following the lead of the Varrells, the Hedrick family joined the event in 2007 starting the team 12:15 Express. A long-time member of the Holliston Lions Club, Steve recruited the support of the Lions and the Leos who not only provide an annual donation, but many LION and LEO Club members volunteer on the day of the event.
Steve Hedrick shares “The 12:15 Express team of riders, volunteers & donors has participated in Cycle for Haylee-Cycle for Life for many years to support our two daughters, Kristen & Kate, as they battle cystic fibrosis. We have had the phenomenal support of our family and friends to help support the progress needed to develop new drugs and treatments which have really improved their quality of life and extended their life expectancy. When our girls were diagnosed with CF, the life expectancy of someone born with CF was 21 years of age. With the help of all these CF Fundraisers, the life expectancy is now over 50 years of age! Our family has been able to celebrate many more special occasions and create many more wonderful memories. We’ve come a long way but we’re not done yet!”
Join us on the road to cure cystic fibrosis. Check out the event webpage: fightcf.cff.org/RIDEMA.
For questions call Laura Donahue at 508-655-6000.
More information about cystic fibrosis:
Cystic fibrosis is a genetic disorder that affects the lungs, pancreas, and other organs. There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries), and CF can affect people of every racial and ethnic group.
In 2019, Trikafta was approved by the FDA. This modulator has had a significant impact on the lives of many with cystic fibrosis. Yet, progress comes with new challenges. People with CF increasingly face complication associated with their disease and many people with CF are still waiting for their breakthrough treatment.
Genetic therapies – our best hope for a cure for all people with CF – are more complex than anything we have ever done and will requires substantial investment. There are many who cannot tolerate developed treatment or who have rare mutations for which there is not treatment.
From now through 2034, the Foundation projects spending approximately $5 billion on research for the CF Foundation. More than 60% of this amount, approximately $3 billion, will be spent on our Path to a Cure program to accelerate treatments for every person with CF.
Although the Cystic Fibrosis Foundation has made tremendous progress, the most important and challenging work still lies ahead.