I am riding in Coast to the Cure to raise awareness and support for those affected by neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body. The funds I raise will support the mission of NF Northeast: helping to fund patient and family support programs, advocacy efforts, and cutting-edge research.
Every mile I ride brings us closer to better treatments, increased awareness, and a brighter future for those living with NF. Thank you for supporting this important cause!
Why I'm Riding
First and foremost I am in my late 40's and have lived with NF my entire life. Until recently, and still today, the impact on my quality of life was very low. A little over a year ago I had my first real scare, after suffering a concussion after a snowboarding accident, an MRI revealed a 7 cm (think bigger than a baseball) size growth in my chest cavity near my left lung. This was the first cervical MRI I've ever had, the tumor could have been there since my childhood, I'll never know. Luckily over the last 18 months it has not grown in size, is benign and I don't have any symptoms that it is even there. My daughter on the other hand has had severe orthopedic complications due to bowing or her lower right leg. After bravely going through countless surgical procedures to straighten her tibia, there has finally been success. She is now wrapping up her Junior Year at Elms College perusing a BSN in Nursing, after which she'll be a RN, with dreams of continuing her education into her Masters and beyond. My mother also lives with NF and has had some complications throughout her life, my grandmother had NF as did her sister as well as one of her parents. Bottom line, NF has been in my family for at least 5 generations, possibly more. It sucks, plain and simple, it sucks. With recent funding cuts at the federal level it sucks even more. Thanks to rides like this and supporters like you we can make a difference and CYCLE FOR A CURE! I will be riding the 66 mile ride this year, please consider a donation to my fundraising efforts. A donation of any size is tremendously appreciated.