BENEFITING: Neurofibromatosis Incorporated Northeast
ORGANIZER: Neurofibromatosis Incorporated Northeast
EVENT: Boston Marathon 2014
My Son Matthew was was diagnosed with NF1 when he was around 6 months. The first signs were the cafe latte spots. He was slow to develop speech and has fine motor skill issues. He is now 3 in preschool and doing great. Why am I fundraising? I'm not a Doctor nor am I wealthy. When Matthew was diagnosed I did exactly what the Neurologist told us not to do and looked it up on the internet. I wanted to find a way to help my son so that he never has to worry about his body betraying him. I'm hoping that organizations like Neurofibromatosis, Inc., Northeast will keep advocating and funding research so that someday my child and hopefully his children will never have to worry about about even spelling Neurofibromatosis.