Last weekend, Leanna Scaglione was among the nearly 30,000 people who celebrated as they crossed the finish line of the RBC Brooklyn Half Marathon in Coney Island. The race itself is a cause for celebration: after months of training, she and the other runners had just finished running 13.1 miles in unseasonably hot and humid conditions.
But for Scaglione, the race was part of a long journey with an illness she once thought would derail her life.
At 15, already a dedicated dancer, Scaglione felt a sharp pain shoot through her right leg while training at her new ballet school.
Determined to become a ballerina — and knowing her mother had sold their home to support her dream — she pushed through it for over a year. But by the time she started rehearsals for “The Nutcracker,” the pain became impossible to ignore.
A series of doctor visits revealed the cause: NF2-related Schwannomatosis, a rare genetic disorder that causes tumors to grow on the nervous system. A grapefruit-sized tumor on her spine left her in a wheelchair for a year and ended her dreams of a professional dance career.
But Scaglione continued on her path despite the diagnosis.
“I can’t sit still,” she said.
Over time, she regained mobility in her legs. During the pandemic, she subscribed to Apple Fitness+ to stay active at home. Still, Scaglione felt sedentary.
“I got tired of staring at the same four walls,” she said.
So she stepped outside for a walk along the East River.
“I was walking and thought, ‘This feels really slow — let’s try going a little faster.’ The next thing I knew, I was jogging. The runner’s high kicked in. I ran a mile. Cried with joy. And then I thought, ‘I’m gonna run home,’” said Scaglione.
That spontaneous jog sparked a transformation. She began running regularly, gradually increasing her distance and endurance. Since then, she’s completed the United Airlines NYC Half Marathon, Brooklyn Half Marathon, a 10k race, and even the New York City Marathon — all while undergoing chemotherapy and managing facial paralysis and hearing loss.
Scaglione found community through the New York Road Runners. During one race, as she climbed onto the Manhattan Bridge, she spotted a runner ahead wearing a blue shirt with a square on the back that read “End NF.”
“It was the first time in my life I saw ‘NF’ out in the world — not in a doctor’s office, not in a quiet conversation with my mom, not surrounded by people who were depressed about their diagnosis,” she said. “Seeing that runner, I just started crying. It powered me through the rest of the race.”
Since that moment, Scaglione has become deeply involved with NF-focused running groups, finding solidarity, purpose, and new meaning in her condition. Last year, she ran the United Airlines NYC Half Marathon just two months after she had brain surgery to remove an NF-related tumor in her right ear.
And on May 17, she was joined by six teammates — including fellow NF warriors, a doctor from NYU, and members of the NF Endurance Team — for her fourth Brooklyn Half Marathon, which she completed in just over two hours.
Afterward, she made her traditional post-race stop at Nathan’s on the boardwalk.
Scaglione has even bigger goals: She hopes to be the first person with NF2-related Schwannomatosis to earn the Abbott World Marathon Majors Six Star Medal. She’s already registered for the Berlin Marathon in September, has Tokyo lined up for 2026, and hopes to finish in Boston.
