NF Walk hopes to shine a light on rare genetic disorder

NF Walk hopes to shine a light on rare genetic disorder
Published: May. 27, 2022 at 5:18 PM EDT
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CINCINNATI (WXIX) - Next Saturday, there will be a walk to raise awareness for a rare genetic disease with no cure.

Neurofibromatosis, called NF for short, is a genetic disorder affecting the nervous system. It is diagnosed in one of every 3,000 people.

Symptoms vary from chronic pain and blindness to learning disabilities. Tumors form under the skin causing bumps and blemishes.

It is often diagnosed at a young age, but with no cure, people live with NF for their entire lives. That’s the case for Joe Kemphaus.

“There weren’t very many of us around [when I was first diagnosed],” remembers Kemphaus, “And then finding other people whether it was going to camp out in Salt Lake City, Utah or meeting random people in the hospital. It was so great to meet other people with this thing [the NF walk] because people can understand what you go through, but unless you have this too, you don’t quite understand it.”

Kemphaus is a teacher at Heritage Hill Elementary School. He met Kim Thyberg who is also a teacher in the same district. Kim’s 12-year-old son Jake has NF.

The NF Walk happening next weekend in Mason is not only a fundraiser, it also helps connect people living with this disorder.

“It creates a sense of community,” says Kemphaus, “And that’s what I love so much about the walk is that it has developed this huge community within the NF community.”

Kim has been attending the walk with her son for almost a decade.

“The walk is called ‘Shine a Light on NF Walk’ to shine a light or just raise awareness about NF,” Thyberg continues, “And also to raise money with the Children’s Tumor Foundation to support our research.”

In the spirit of friendly competition, Kim and Joe have challenges to see who can raise the most money. The person that comes up short has to do something silly.

“We [Kim and Jake] walked around Oakley in some wacky clothing,” remembers Kim, “And then the final challenge that we did together was the spicy food challenge.”

Jake lost that challenge and had to eat spicy food and a spicy potato chip.

You too can have fun while supporting a good cause at the NF Walk next Saturday. And no, you don’t have to wear wacky clothing or eat spicy food to participate.

The walk is at Corwin M. Nixon Park in Mason at 8:30 a.m. on June 4. You can register here.

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