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

Why I Ride
By: Alex Cellucci, Coast Rider and Committee Member

My name is Alex Cellucci and I ride.

I ride for my father, who not only has to endure the physically debilitating pain of spinal tumors and the emotional frustration of hearing loss, but worst of all each heart wrenching diagnosis of his three daughters and his granddaughter with NF2.

I ride for my oldest sister Stephanie, who was an avid cross-country runner before the crippling effects of her spinal and nerve tumors robbed her of the ability to ride. I ride for my younger sister Marissa, who not only had to face the everyday adversities of a teenager in high school, but also had to experience her first brain surgery and wake up with complete hearing loss on one side.

I ride for my 28-year-old-self, who at 9 months pregnant heard the words, "the genetic testing confirms you do have neurofibromatosis type 2."

I ride for my mother, who has to sweep in and pick up the pieces with her love and strength every time NF2 comes in and drops a bomb on our family.

I ride for my brother Liam, because I know how much he loves us and the anxiety that NF2 causes an entire family has become a burden he has to bare.

I ride for my husband, and his always positive and hopeful attitude, even on the worst of our days.

Most of all I ride for my sweet 6-year-old Maible and hope that her fun-loving spirit never be broken by NF2, and that we find a cure before the effects of NF2 leave any lasting scars on her innocent body.

I ride because sometimes that's all I can do to feel like I am making a difference.

This year I am lucky enough to be riding my 7th Coast to the Cure. This year my body will allow me to ride, but I will not be riding alone. I will have my team beside me with their unwavering love and support. Their commitment in helping us fight for a cure is astounding. All of their hard work and training for this event has not gone unnoticed. I am over the moon with gratitude for each and every one of you. This year let's ride with hope in our hearts, a hope that the money we raise will fund a cure for NF!

Event Description:
The 9th Annual Coast to the Cure NF Bike Ride starts and finishes at Stage Fort Park in Gloucester, MA. To accommodate all level of riders, the Coast to the Cure Road Course offers four routes of varying lengths: 24, 40, 66 and 100 miles.

Proceeds from the bike ride benefit neurofibromatosis (NF). 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 will make it possible for Neurofibromatosis Northeast to invest in scientific research at the Center for Human Genetic Research at Massachusetts General Hospital and allow the organization to help the many families dealing with neurofibromatosis by providing information and support.

For more information and to register for the ride please visit:

https://nfnortheast.org/events/event/coast-cure-bike-ride-2019/

Link to Alex’s fundraising page:

https://www.firstgiving.com/fundraiser/alexandra-cellucci/Coast-to-the-Cure-NF-Bike-Ride-2019