Will Hoffman, a resident of Penn Township, is not your typical marathon runner. His motivation for running the New York City Marathon is not about achieving a remarkable finishing time or securing a top position. Instead, Will, along with about 25 other dedicated runners, is on a mission to reach a fundraising goal of $150,000 for the Children’s Tumor Foundation. This foundation is dedicated to supporting research for a cure to a genetic disorder known as neurofibromatosis.
Neurofibromatosis, often referred to as NF, is one of the most common genetic disorders, as reported by UPMC Children’s Hospital. It involves the growth of benign tumors on the body, which can lead to various challenges, including difficulties in learning, mobility, and hearing.
For Will Hoffman, this cause hits close to home. His 12-year-old son, Liam, was diagnosed with neurofibromatosis about two years ago. The challenges that individuals like Liam face are not always visible to the casual observer, much like the extensive training that goes into preparing for a marathon.
Will aptly compares a marathon to the challenges of those living with neurofibromatosis. He explains, “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 because at mile 20, when you’re hurting and tired, you think about what these folks have to do every day and live with every day and overcome every day. It makes what we’re doing for a few hours on a Sunday insignificant.”
While Liam’s diagnosis places him on the fortunate side of the NF spectrum, it remains essential to communicate his needs to teachers. As Jamie, Will’s wife and a teacher herself, explains, the manifestations of NF can vary from day to day, resembling conditions like dyslexia, ADHD, or other learning disabilities. Tailoring education to suit these needs can be a significant challenge.
The journey began for Will and Jamie when they noticed symptoms of NF appearing in Liam at the age of 2, with the presence of café-au-lait spots that resemble large birthmarks. By the time Liam turned 10, these spots had multiplied, prompting a visit to the NF clinic at Children’s Hospital. Liam now undergoes regular MRI scans and sees a neurologist to monitor potential internal tumor growth.
Apart from his medical appointments, Liam leads the life of a typical 12-year-old. He is a seventh-grader at Penn Middle School, engages in karate, and occasionally joins his father’s passion for running. Once he fully recovers from a foot surgery he underwent in April, Liam plans to prepare for the Pittsburgh 5K, scheduled the day before the half and full marathon races in May.
Liam aspires to rally 100 participants for the 5K, including his parents and possibly his younger brother, Miles, age 7. The youngest sibling, Nolan, age 5, may not run the race, but he will be there to support Liam along with other family members.
For Will, the Pittsburgh Marathon is the next milestone in his journey. This upcoming marathon will mark his eighth since he ran his first in Pittsburgh nearly a decade ago. While he initially took up running as a way to stay in shape and was captivated by the mentality of a marathon runner, it has now become a means to inspire his children.
Through their collective efforts, the Hoffmans are using Liam’s diagnosis as a platform to impart the lesson that challenges do not preclude the possibility of making a positive impact on the world. They find inspiration in the numerous individuals who have joined their cause, whether they are seasoned runners or newcomers. The unity of people coming together for a common purpose is a testament to the strength of community.
In summary, Will Hoffman’s commitment to raising awareness and funds for neurofibromatosis through running is not only a testament to the love for his son but also a source of inspiration for everyone facing challenges. It exemplifies how ordinary individuals can come together to support those affected by a genetic disorder and work toward a brighter future.
Leave a Reply