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The NF Hope Concert was founded in 2011 by Jeff and Melody Leibow, soon after their daughter, Emma, was diagnosed with the neurological disorder, Neurofibromatosis (NF) at the age of nine months old. The purpose of the concert is to raise awareness and much needed financial support for the fight against the NF. 100% of the proceeds go to Neurofibromatosis Network, a 501(c)3 dedicated to supporting NF families across the country and fighting to fund the search for the cure.
Simply, NF is a genetic disorder of the nervous system characterized by tumors that can grow on any nerve in the body at any time. There is no cure for NF, and there are currently no treatments. Symptoms range from benign (birthmark-like “cafe au last spots”, learning disorders, attention disorders) to more moderate (blindness, deafness, chronic pain) to severe (disfigurement, cancer and death). One in 2,500 people are born with NF. In 1 in 3,000 cases, it is the result of a random genetic mutation (this is how Emma was born with it). It is the most common genetic disorder affecting more than 128,000 in the US alone making it more prevalent than Hereditary Muscular Dystrophy, Cystic Fibrosis, Huntington’s Disease and Tay Sachs combined.
The NF Hope Concert is what we do for Emma and everyone living with NF, when in truth there is very little we can do.
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