This page is in loving memory of Mariel Story. A beautiful NF angel. We will forever love you.
What is Neurofibromatosis (NF)?
Neurofibromatosis (NF) is a neurological disorder. There are 3 types of NF. CoachoJojo's best friend, pictured above, had NF 1. She passed away at the young age of 29. NF is a very painful degenerative nerve disease. There is currently no cure for NF. Let's work together to #EndNF!
NF 1 is characterized by multiple café au lait (light brown) skin spots and neurofibromas (small benign growths) on or under the skin, and/or freckling in the armpits or groin. About 50% of people with NF1 also have learning challenges. Softening and curving of bones, and curvature of the spine (scoliosis) may occur in some patients with NF1. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. While NF tumors are generally not cancerous, they may cause health problems by pressing on nearby body tissue. [Quoted from the NF website in link below]