MANHATTAN (PIX11) – At 15, Leanna Scaglione got an MRI for a ballet injury. Doctors found two tumors in her hip and diagnosed her with Neurofibromatosis, a rare genetic condition that causes tumors to grow throughout the body.

“It was devastating. I had my entire life planned out since I was eight years old. Then at 16, having that tumor come out, having it take two surgeries and ending up in a wheelchair unable to walk or stand it was like having the rug ripped out from underneath me,” said Scaglione.

None of that stopped her. During the pandemic, Scaglione took up running.

“I was like, you know what I live right over here on the Upper East Side. I have this Riverwalk lets go for a walk. So I went for a walk, and as I was walking, I was like, you know what, this is kind of slow; let me try running. I’d never really ran because after the surgery because I was so afraid that the impact would hit the nerve endings,” said Scaglione.

Today at 31 years old, Leanna is raising funds to end NF and raise awareness about the disease. She participates in the United Airlines NYC Half as part of the NF Endurance Team on Sunday, March 19.

She’s also currently involved in a chemotherapy drug trial to address tumors on her auditory nerves, as she actively loses hearing in her right ear.

“I’m trying to make it clear that this isn’t the end. Once the trial is over, these tumors will still exist and I will still have to find a way to deal with them. I just want to show people that they can just continue to live their life no matter what’s placed in front of them; it shouldn’t stop them,” said Scaglione.

Currently, there is no cure for NF. However, Annette Bakker, the President of the Children’s Tumor Foundation, said their mission is to drive research, expand knowledge and increase care for those with NF.

“I’m really proud to say that we have the first drug approved for NF 1, which was approved in 2020. There is a first drug now which really creates an energy in the pharmaceutical company sector who are now coming to us and saying we are willing to put our drugs into this NF space as well,” said Bakker.

Bakker said NF could lead to several problems like blindness, deafness and severe pain.

“When people are born with NF, people always describe it to me, or patients and families describe it to me like walking through a train tunnel. You don’t know exactly what’s going to happen, but when the train comes and hits you, it can hit you really hard,” said Bakker.

To find out more about the Children’s Tumor Foundation and NF, you can visit CTF.org. You can also follow Leanna’s journey on Instagram and TikTok @Leanna_RunningNF2.