Runners and walkers are encouraged to come out for Friday’s K-Bay 5K for Leo. All the proceeds will go toward funding research to help find treatments or a cure for Neurofibromatosis. The 5K is named after 14-year-old Leo Ogle, who was first diagnosed with NF at the age of 3.
Neurofibromatosis is a genetic condition that affects one in every 3,500 people.
“Half of those people, it’s just a random mutation, which is the case with our family. Other times it’s passed on,” Denise Pitzman said.
Denise is Leo’s mom. She said her family discovered Leo’s condition when he was 3. One of the “tells” for the disease is spots on the skin that are called “Café au lait” spots.
“They’re the color of coffee with milk in them. And a lot of people do have these naturally occurring anyway. It’s just if you have more than, I think it’s five, on your body, that’s one of the indicators,” she said.
Denise said this was the first instance that she had a sick child and there was no treatment on-hand.
“They had an ear infection we went and got them antibiotics. Any kind of concerns we had, there was some kind of solution. I was completely dumbfounded to find out that he had some that there was just no treatment for at all. So when we first saw doctors for it, they just said ‘oh, we just watch it,’” she said.
And that’s what Leo’s doctors have done. Denise said one of the more alarming aspects of this disease is that it causes tumors to form along the nerves in the body. So doctors try to deal with those through cancer treatments. Denise said Leo’s doctors often refer to his “tumor load” because there are so many in his body.
All of this has spurred Denise to fundraise for treatments and hopefully, one day, a cure. Friday’s 5K is the third time the family has put on the event.
“It’s really wonderful for all of us in his family to see the people come out and support something like this,” she said.
She said although when people hear “5K” they may think running, that isn’t necessary.
“All are welcome. It’s a family event for any speed,” she said.
Denise said a $25 entry fee will be donated to the Children’s Tumor Foundation.
“Research is ongoing and sometimes what we have to be excited about is that something has been ruled out as a potential treatment. That’s progress,” she said.
She said she expects other affected families from around the state to show up for the 5K as well. And Leo also plans to participate. She said everyone should come out because continued research could pave the way for treatments for cancer, bone deformities and heart conditions.