Lynn resident Erica Phelan will be riding in Neurofibromatosis Northeast’s Annual Coast to the Cure NF Bike ride on Saturday, September 10.
Why I Ride
by Erica Phelan, Coast Rider
Last year I decided to take on the challenge of doing my first Coast to the Cure bike ride for Neurofibromatosis and this year I will be participating once again. Five years ago my son Matthew was diagnosed with NF 1. Before that day my husband Patrick and I had never even heard of the disorder. His doctor set up an appointment for him to see a neurologist and we were advised not to look it up and to wait to speak with the specialist. Of course we looked it up and we were both scared by what we saw on the internet, but there was one website on the internet that provided hope to us, nfincne.org. NF Northeast is an amazing organization and we have met so many amazing people through them. We have made friendships and connections to last a lifetime. After my husband and I learned about this organization we vowed to do all we can to help raise money and awareness. Now 5 1/2 years later my husband and I have done everything we can to raise money and awareness to find a cure.
Matthew is a very happy, active 6-year-old who is starting first grade in the fall. He has an infectious smile and anyone who knows Matthew can’t help but to smile and laugh around him. He is the sweetest, most loving little boy! Matthew has trouble with his speech, fine motor skills, ADHD, and OCD. Each new spot or bump is a reminder to us about this terrible condition lying in the background of our day to day lives.
I’ve supported my husband’s athletic fundraising efforts and I felt the need to challenge myself in another way to support such an amazing organization. It has been a fantastic stress reliever and great exercise. I am riding to raise awareness and to help find a cure. I am riding so that smile never leaves my son’s face. I am riding to find a cure so maybe one day Matthew’s children will never have to worry about a word I could barely pronounce! I am riding for all the children and adults effected by Neurofibromatosis.
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 us 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.