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 Neurofibromatosis is a genetic disorder that causes tumors to grow on any nerve in your body at anytime. It affects 1 in 3,000 births and can show up in any family at any time. Every person with NF lives a life of unpredictable complications and challenges. It is a progressive disorder. Some have few or no complications while others have life threatening complications or chronic conditions that challenge them every day. NF can cause learning disabilities, deafness, blindness, disfigurement, bone abnormalites, brain and spinal tumors, and many other complications.
John is 13 years old and has Neurofibromatosis (NF). He is incredibly brave and we are blessed to have him in our lives. We learned about NF when John was one-year-old and had several "birth marks". These marks we learned were cafe-au-lait spots which is one of the diagnostic criteria for NF. We saw a doctor every year who evaluated John for having NF. At the age of 4, he was officially diagnosed with NF1. When John was eight (October 2005) we found a brainstem tumor. In 2006 he had three surgeries on this tumor and started chemotherapy. He recovered great from all 3 surgeries. He had about 40 chemo treatments over 14 months, and finished January 2008. This tumor will always be there and has recently started to change/grow. As we enter into this new phase of John's battle with NF we hope you will consider donating to this great cause and help John and the hundreds of thousands who are also battling this disorder. We have watched him overcome and deal with more than we ever have. He is incredibly brave and strong. There is currently no effective drug treatment for neurofibromatosis (NF). The Racing4Research program helps to change that by funding Drug Discovery Initiative(s). 100% of all donations go directly to discovering new and better treatments for NF and to find a cure. Neurofibromatosis research has and will continue to positively impact cancer research and other nerve disorders. Please help to stop these tumors - FUEL THE CURE.
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