Why I Ride, By: John Roy, Coast Rider

Why I Ride
by: John Roy, Coast Rider

This will be my 4th Coast to the Cure NF Bike Ride. I am riding because Neurofibromatosis has had a major impact on several people in my family, including myself.

The main reason that I am riding is my daughter Carin. Carin is 17 years old and she means the absolute world to me. When Carin was 3 months old, her mother was bathing Carin and she noticed a café-au-lait, a birth mark, on Carin’s elbow and with my family history of NF that is all that was needed to make a diagnosis.

When Carin was around 5, they did a routine MRI of her brain and the doctors found an optic glioma (a benign tumor on the optic nerve). As of right now, the tumor is not causing any major problems but this is something that is going to have to be monitored for the rest of Carin’s life. I couldn’t be more grateful to the NF specialist team at Boston Children’s Hospital for their treatment of Carin.

Some of my other family members that have been affected by NF include my mother who died when I was just 3 ½, my brother Eddie (he died in 1998 from a brain tumor that was caused by NF), my older brother David, and my nephew Chris.

I am happy to report that I will be riding with my fellow teammates, Megan’s Maniacs again this year. The team captain, Kate Duff, organized this ride and her team because of the countless health issues that her daughter Megan suffers from because of NF.

Starting and finishing at Stage Fort Park in Gloucester, cyclists can opt for one of three routes of varying lengths: 24, 66 and 100 miles. All routes travel along Cape Ann’s shores and through Manchester-By-The-Sea, Beverly, Hamilton and Ipswich. Proceeds from the bike ride benefit Neurofibromatosis Northeast. The Mission of Neurofibromatosis Northeast is to find a treatment and the cure for
neurofibromatosis by promoting scientific research, creating awareness, and supporting those who are affected by NF.

Neurofibromatosis (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.

Funds raised from the bike ride will make it possible for NF Northeast to invest much needed resources in groundbreaking research into NF. In addition, proceeds will make it possible for NF Northeast to help the
many families dealing with neurofibromatosis by providing information and support.

The bike ride is on the NF Northeast website at: http://nfincne.org/events/event/coast-to-the-cure-bike-ride/ and for more information about the organization please visit: http://nfincne.org/

Visit John’s fundraising page at: http://www.firstgiving.com/fundraiser/JohnRoy/nf-coast-to-the-cure-2016