Community Connections: Children's Tumor Foundation

Little Rock (KATV) — You may not have heard of Neurofibromatosis referred to as “NF.” It's a genetic disease that causes tumors to form all over the body. NF is very under-recognized and there is a huge need for doctors to specially support it.

Doctor Erika Horta is leading the way when it comes to helping patients with neurofibromatosis.

Before last year, adults living with NF in Arkansas had no clinic focused care in the entire state.

"Here in Arkansas this clinic is the only one. There are states in the United States that have no clinic of NF, so patients with NF have to travel to other states to have care,” Dr. Horta said.

That all changed when the Children's Tumor Foundation partnered with UAMS Rockefeller Cancer Institute to pilot one of the first stand-alone adult clinics in the country.

It's care that NF patient Katie Holt and her mom Lesley Oslica have been fighting for over 20 years.

Katie was eventually diagnosed as a child after doctors initially missed it.

"I didn't want that to happen to anyone else in Arkansas. It was a really difficult day when we learned that because I did feel a bit of a failure for missing the opportunity to advocate for her for all those years,” Oslica said.

Lesley quickly jumped in, raising funds for NF, opening a chapter of the Children's Tumor Foundation in Arkansas and fighting for her daughter.

"For me personally, NF affects me with neuropathy, nerve pain, there are times when I can feel everything so intensely, that it's just debilitating,” Holt said.

While there is a NF clinic at Arkansas Children's Hospital, once Katie became an adult, there was no path for continued care. She now has a place to go.

"Everything has been so amazing in this clinic. It's been so amazing. I'm so loved and cared for there,” Hold said.

Dr. Horta says research being conducted here is the key to the future.

"We are really in the beginning of revolutionary care for neurofibromatosis. We have a medication that was FDA approved in the last three years. There are many clinical trials. All of this comes from research,” she said.

Thursday night is the Children's Tumor Foundation Arkansas Chapter's largest fundraising event of the year: Dancing with Our Stars. You can actually buy a virtual ticket to watch or find out more by clicking here.