BENEFITING: Neurofibromatosis Incorporated Northeast
ORGANIZER: Neurofibromatosis Incorporated Northeast
EVENT: 2013 Boston Marathon
EVENT DATE: Apr 15, 2013
Dear Family and Friends,
I am training to run my 6th Boston Marathon to raise funds for the fight against Neurofibromatosis (NF). The Neurofibromatosis, Inc. NE organization that I am running to support is fielding a team for the 25th year in Boston!!!
As many of you are aware, 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.
Emma is impacted by having several lesions on her brain and an optic tumor behind her eye. She receives great support with her work and is doing well at school. 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 recognize that we ask for your support every year - but we will continue to ask until we have helped find a cure. We thank you for any support that you can provide!!!
Don and Melissa