I am about to run my 5th Boston Marathon to raise funds for the fight against Neurofibromatosis (NF). Running 26.2 miles may be hard, but is nothing compared to living with NF.
As you probably know, our daughter Emma has NF1, a neurological disorder that causes tumors to form in the body and on the skin. People with NF often struggle with learning disabilities, behavioral issues, and poor motor skills, balance and coordination. The implications of NF1 range from mild to severe, and there is no way to predict the prognosis for a specific patient.
Despite having several lesions on her brain and an optic tumor behind her eye, Emma is currently a spunky, happy, third grader. She receives great support with her work and is doing well at school. She just earned her blue belt in Karate and already has her ticket for the first Sox series against the evil Yankees.
Emma receives remarkable care at Children’s Hospital Boston to monitor any changes that may occur with her body or behavior. While we feel fortunate to receive such great care, the need for awareness and advocacy is critical and remains a never-ending process. Despite being one of the most common genetic disorders in the United States (one in every 2,500 births), NF does not receive much funding because it remains unknown to many.
We do everything we can to support the fight against NF. This includes asking for support from friends, co-workers, neighbors and family.
We appreciate your decision to make NF one of the causes that you support this year. We have met such great families through the outreach efforts of NF Inc., NE, and are doing everything we can to support this great organization. We thank you for any support that you can provide!!!
Don and Melissa
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