|Welcome to nfhope.org|
|About NF Hope|
Meet our daughter, Emma. She is the inspiration for NF Hope, and she is the reason you are reading this now...
When Emma was born, we noticed some spots that were immediately dismissed as birthmarks. As she continued to develop, we started to find more of them. Fortunately, we have a good pediatrician who told us to keep an eye on themas they might be "Cafe au Lait" spots, a common symptom of a neurological disorder, call Neurofibromatosis (or NF). She suggested we take Emma to a neurologist. So, we did. And after a few visits and a couple of MRIs, Emma was diagnosed with NF Type-1 at the age of 9 months.
Before our pediatrician had spoken the word, Neurofibromatosis, we had never heard of it. Our reaction was to look it up online, which did nothing more than fuel our fears. So, we decided to find an organization that could tell us more about the disorder, guide us to doctors and help us figure out what happens next. That is how we connected with NF Network.
Our discussions with NF Network helped us understand how to be a parent of someone with NF. In a nutshell, BE PROACTIVE. If we notice something, ask a doctor; get Emma annual visits with a pediatric neurologist who understands NF; and most importantly, don't let NF or the fear of what it can be run your lives.
NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births). The neurofibromatoses affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined. Yet so few people know what it is.
In simple terms, NF results from a mutation on a gene that normally supresses tumor growth. This allow for the growth of tumors, called neurofibromas, on any nerve in the body, at any time, without warning. Symptoms include learning and attention disorders, disfigurement, blindness, deafness, bone development issues, seizures and in some cases even cancer and death.
In the three and a half years since Emma was diagnosed, we have found about a dozen of tumors, and earlier this year an MRI revealed a brain tumor. Fortunately, she is an otherwise very healthy, vivacious four year old. And we continue to pray that she will live her life that way.
For three decades groups like NF Network (formerly NF, Inc.), the Children's Tumor Foundation and others have worked tirelessly to fund research. In 1996, an advocacy movement led to the first federally funded NF research, and every year since, NF Network has helped foster that movement which has provided approximately $225 Million to NF Research.
That is why NF Hope exists: to produce events that raise not only money for NF charity organizations, but even more importantly, raise awareness.
But we know there is no cure or treatment...yet. So, we will do everything we can with the hope that Emma and the more than 100,000 people living with NF may see a cure for neurofibromatosis in their lifetime.