Will Hoffman’s main motivation for running the New York City Marathon on Sunday has little to do with a finishing time or position.
Rather, Will and about 25 other runners are chasing down a fundraising goal of $150,000 for the Children’s Tumor Foundation — an organization that supports research for a cure to a genetic disorder called neurofibromatosis.
During the race, Will, 45, of Penn Township will channel energy from the resilience of people like his 12-year-old son, Liam, who was diagnosed with the genetic disorder about two years ago.
Preparing for a marathon requires hundreds of miles of training, Will said, but this dedication often goes unnoticed by the casual observer. In the same way, people do not see all of the challenges that come with a neurofibromatosis diagnosis.
“A marathon is hundreds of miles. The race is just the last 26.2. That’s kind of why the marathon fits in with (the foundation) so much,” Will said, “because at mile 20, when you’re hurting and tired, you think about what these folks have to do everyday and live with everyday and overcome everyday.
“It makes what we’re doing for a few hours on a Sunday insignificant,” he said.
Neurofibromatosis, also referred to as NF, is one of the most common genetic disorders, according to UPMC Children’s Hospital. It involves the growth of benign tumors on the body, which can cause challenges in learning, mobility and hearing, Will said.
Will and his wife, Jamie, are members of the executive advisory board of the Neurofibromatosis Clinics Association, a Pittsburgh-area nonprofit that provides resources to families facing NF.
The association also raises funds for research and the NF clinic at Children’s Hospital. In the past two years, local runners have raised $50,000 for the association, Will said.
Although Liam is “on the lucky side” of the NF diagnosis, said Jamie, 43, it is important to communicate his needs to his teachers.
“One day, (NF) can look like dyslexia. One day it can look like ADHD. One day it can look like your standard learning disability,” said Jamie, a teacher at Harrison Park Elementary School. “There’s not really been a lot of information put out there for teachers. It is hard to tailor education for what it needs to be, so that’s kind of our biggest hurdle at this point with it.”
Will and Jamie first noticed the symptoms of NF appearing when Liam was about 2 years old. He had a few cafe au lait spots, which look like large birth marks, Jamie said.
When Liam turned 10, the marks had multiplied. His doctor referred the family to the NF clinic at Children’s Hospital. Every year, Liam gets an MRI and sees a neurologist to make sure he has no internal tumors growing.
“Besides that, he’s a pretty typical 12-year-old,” Jamie said.
Liam is a seventh grade student at Penn Middle School. He does karate and he’s occasionally taken on his father’s hobby of running. Once he is fully recovered from a foot surgery he had in April, Liam will train for the Pittsburgh 5K, which takes place the day before the half and full marathon races in May.
“It’s going to be my first run ever since the surgery, so I’m a little nervous and a little excited,” he said.
Liam aims to recruit 100 people to run the 5K with him, including his parents and maybe his brother Miles, 7. His other sibling, Nolan, 5, may not be able to run the race, Will said, but he will be there to support Liam with relatives.
Will signed up to run the Pittsburgh Marathon last week. It will be his eighth marathon since he ran his first in Pittsburgh nearly a decade ago.
He enjoyed running occasionally in high school, and, as he got older, he began running long distances to stay in shape. Will has always been “fascinated with the mind of a marathon runner,” he said, and wanted to give it a try himself.
But now, between training runs and strength workouts, he hopes his efforts inspire his children.
“(We’re) trying to use Liam’s diagnosis as a way to help him understand, ‘OK, I may have some challenges, but that doesn’t mean I can’t use it to change the world,’ ” he said.
Will is inspired by the number of people who have run challenging races in support of Liam and others facing NF.
“It’s been cool to see … how many people who have never run before said, ‘Yeah, I’ll do it. I’ll run a half marathon. I’ll put a relay team together,’ ” he said. “Folks that I’ve known my whole life and folks that I’ve never met, they’ve just converged and found a reason to run and in the last two years.”