Why We Ride in the Coast to the Cure NF Bike Ride

For Kevin McKelvey of Boxford and Ben Buttrick of Essex their introduction to neurofibromatosis (NF) and Neurofibromatosis Northeast’s Coast to the Cure NF Bike Ride has been quite different. Kevin and Ben are co-chairs of the bike committee for the 8th Annual Coast to the Cure NF Bike Ride that takes place on Saturday, September 8 at Stage Fort Park in Gloucester, MA.

Kevin’s son Tim was diagnosed with NF1 as an infant by Beverly Pediatrics’ Dr. Danais. After being diagnosed, he has been treated at Boston Children’s Hospital.

Kevin says, “We have been extremely lucky with impacts thus far, but understand this disorder can be very unpredictable and far ranging.”

NF involves the uncontrolled growth of tumors along the nervous system and is a highly variable and progressive disorder. NF is not rare, it affects three times as many people as Cystic Fibrosis and Muscular Dystrophy combined. While not all NF patients suffer from the most severe symptoms, all NF patients and their families live with the uncertainty of not knowing whether they will be seriously affected one day.

Kevin found the Coast to the Cure NF Bike Ride by picking up a brochure at his local bike shop and shortly after became part of the bike committee.

Starting and finishing at Stage Fort Park in Gloucester, cyclists can opt for one of four routes of varying lengths: 24, 40, 66 and 100 miles. And new this year is the 40-mile route! All routes travel along Cape Ann’s shores and through Manchester-by-the-Sea, Beverly, Hamilton and Ipswich.

Kevin says, “The event stands out with energy, passion and purpose. Each rider is touched in some way by NF - whether it’s a friend, family member or colleague. NF Northeast is a very tight community. We celebrate success and recognize the challenges faced by an NF diagnosis through an amazing day of biking, food, celebration and fellowship. The topography and scenery of the Coast to the Cure is unmatched by any ride of its kind and we pride ourselves on the quality of venue, food and comparative affordability.”

For Ben Buttrick his experience has been different and unique from many of the others on the bike ride committee.

“I do not have an immediate family member that is inflicted with NF. My son's very good buddy is Tim McKelvey, and Kevin asked me to ride five years ago. I was struck by the passion and comradery of the riders and quality of the course. Kevin asked if I wanted to help him on the planning committee the following year. I was happy to because the real motivator for me is that NF seems to fly under the radar in public awareness, and the scale of research and support is small relative to other inflictions. In short, it needs to grow and the small size of NF Northeast allows my volunteer time to really have an impact, and I find that much more rewarding than if I was helping a bigger more richly-funded cause.”

For those considering participating, Ben says that the course is really outstanding. “Starting in Gloucester, the terrain goes from a seaside landscape along the rocky shoreline to more rural farmland on the interior. The hills are rolling but very manageable.”

Kevin and Ben hope to host over 200 riders at this year’s bike ride and Ben says, “Each rider can make a big impact. The ride is also important, perhaps more so than the dollars, for raising awareness of NF.”

To learn more about the bike ride and Neurofibromatosis Northeast please visit:

https://nfnortheast.org/events/event/coast-cure-bike-ride-2018/

Visit Ben’s fundraising page at: https://www.firstgiving.com/fundraiser/BenButtrick/2018-coast-to-the-cure-nf-bike-ride3

Visit Kevin’s fundraising page at: https://www.firstgiving.com/fundraiser/kevin-mckelvey/2018-coast-to-the-cure-nf-bike-ride