Neurofibromatosis type one (known as NF1 for short) is a genetic disease that, in the words of Washington University neuroscientist Dr. David Gutmann, "one of the most common disorders most people have never heard of." One person in 3000 has it. People who have the gene have a predisposition for developing tumors in the nervous system. Side effects include poor coordination, learning disabilities and ADD. The problem with NF1, and the thing that makes it so terrifying, is that you don't know whether, over the course of your lifetime, you'll merely have a few "funky bumps," in the words of one patient's mother, or if those bumps will grow into an enormous nerve tumor, called a plexiform neurofibroma, that will push your bones out of alignment or even a brain tumor.
Gutmann, who is the head of Wash. U.'s NF Center, has been studying the disease for more than 20 years and firmly believes that NF patients are more than the sum of their genes. "They're normal people with unpredictable lives," he says. A few years ago, Courtney Dunn, the NF Center's physical therapist, came up with the idea of Club NF. Six times a year, kids with NF1 and their families meet up at various locales around St. Louis. The parents would get a chance to learn how to help their kids out at home, the kids would get a chance to try new activities and build their confidence and everybody would get a chance to get to know other people whose lives had been changed by NF1.
Last November Club NF met at a west county high school to play theater games and practice a couple of song-and-dance routines, led by a pair of teachers from STAGES St. Louis.
Read Aimee Levitt's feature story "The Mean Gene" here.
Photos by Jennifer Silverberg for Riverfront Times.