When I moved to Amelia Island one of the first people I met was Michele. That is when I first learned about Neurofibromatosis ( NF). While some have tumors near the skin, Michele's tumors appear on nerves inside her body. While she appears fine, she is living in pain. Michele is a fighter and fights endlessly for the children who endure multiple surgeries yearly
Neurofibromatosis, or NF, is an under-recognized genetic disorder that can cause tumors to grow on nerves throughout the body.
NF occurs in one in every 3,000 people and affects millions worldwide.
NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and disabling pain.
NF affects all populations regardless of ethnicity or gender.
Roughly half of all cases arise in families with no history of the disorder.
NF is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined.
NF has three distinct forms, NF1, NF2, and schwannomatosis.
NF research is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community in addition to those with NF.
Progress toward ending NF is being made every day.