Group Shines a Light on Genetic Disorder Causing Tumors

CLIVE, Iowa -- A group wants to raise awareness about a genetic disorder that causes tumors to grow on nerves throughout the body.

Neurofibromatosis is a genetic disorder affecting one in every 3,000 people. The Children's Tumor Foundation plans to shine a light on NF to raise money and awareness.

It was love at first sight when the Ensley family saw Korbin. “Korbin came home with us when he was 2 and a half years old from Korea, and he was born with neurofibromatosis," said Kori Ensley.

Korbin, who is now 11 and going into 6th grade, had multiple cafe au lait spots, which are dark spots, at birth. A tumor appeared on his chest wall this year.

NF can cause other health issues as well. “Korbin specifically struggles with some fine motor difficulties, some learning disabilities, short stature," said Kori.

“Many people with NF are reluctant to talk about it because of the stigma that goes with it,” said Sheila Drevyanko.

Tumors started appearing on Drevyanko's body when she was 14. “I`ve had hundreds of tumors removed from my body, but since NF is progressive, more will come. But, I`m ready for it. I learned a long time ago the body is just a shell for the soul,” she said.

Drevyanko and the Ensleys are part of a group called Children's Tumor Foundation. It is hosting a walk to raise awareness about the disorder. “One of our big goals for this walk is so NF families can meet each other, connect and form friendships for their kids,” said Drevyanko.

About 400 families are part of the group in Iowa. CTF hopes to raise $30,000 to support research. “NF is a genetic disorder that can`t be cured, but we can certainly try to find better treatments. CTF is working towards tumor suppressant drugs, and they`ve been having a bit of success lately. But we really need more research and research takes money,” said Drevyanko.

The Shine A Light on NF Walk is Saturday, August 10th at Raccoon River Park in West Des Moines. Registration/Check-in is at 8 a.m. The walk starts at 9:45. You can sign up at www.shinealightwalk.org/iowa.

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