A Columbia woman who is organizing this month’s walk at Stephens Lake park to raise awareness of neurofibromatosis (NF) describes NF as the most common genetic disorder that no one has ever heard of.
Kristi Saylor has NF and tells 939 the Eagle that the disease is painful:
“Everyone is affected differently. It causes tumors to grow on basically on the nervous system. Can go inside or outside on the organs,” she says.
The walk for NF is planned for Saturday May 30 at 9 am at Stephens Lake park. Ms. Saylor invites you to attend to honor loves ones, celebrate progress and unite for a cause. They’ll also have food and music.
What they said: Walk organizer Kristi Saylor says more than four-million people worldwide have NF. She is one of them, telling 939 the Eagle she doesn’t know how she got it:
“They say it’s like one out of every 2,000 people are born with it. And 50 percent of people that have it is spontaneous. Like I’m a spontaneous mutation, which means no one in my family has it,” Ms. Saylor says.
She says the other 50 percent is genetic.
What it means: The walk for NF will take place on Saturday May 30 at Stephens Lake park’s Gordon shelter, starting at 9 am. Ms. Saylor and other organizers hope to raise about $20,000 that day. You’re encouraged to participate in the walk. You can also make a donation.