A story of courage, community, and the powerful bond between a father and son navigating life with NF1.
For Shaun Neppl, his son Tyler’s NF1 journey began with uncertainty, fear, and a diagnosis his family had never heard before. Tyler was only nine months old when doctors discovered a tumor wrapped around his optic nerve and brain as well as other signs that led to his diagnosis of neurofibromatosis type 1.
At the time, Shaun remembers feeling overwhelmed. “We had no clue what NF was,” he shared. What began as concern over what seemed like an eye issue quickly became MRI scans, specialist appointments, and conversations about brain surgery. But over time, Shaun and his family found their footing through education, advocacy, and community.
Today, Tyler is 2
0 years old and living in Illinois. He enjoys video games, traveling, and photography, especially wildlife and nature photography. Having lived with NF for most of his life, Tyler says it has simply become part of who he is. “I’ve had it so long,” he shared. “I don’t think about it so much. I kind of just go on with my day, hang out with my friends, and travel when I can.”
For Shaun, one of the most important parts of Tyler’s journey has been helping him feel comfortable in the world rather than hidden from it. When Tyler was younger, Shaun visited his school to teach classmates and teachers about NF. He handed out wristbands, answered questions, and helped create understanding around Tyler’s condition.
Tyler remembers those moments clearly. “I loved it a lot,” he said. “I was too shy back then to explain why my eye was the way it was, so my dad explained it. People I had never met would come up and talk to me and ask how I was doing.”
That advocacy extended far beyond the classroom. Shaun has spent years raising awareness, speaking publicly, participating in NF walks, helping with fundraisers, and connecting with other NF families. For him, awareness is not just about explaining a condition. It is about helping people see the person behind the diagnosis.
“I wish NF carried the same weight as other conditions people recognize immediately,” Shaun said. “Not enough people know about NF. It needs to be a 24/7, 365 conversation.”
Community has played a major role in the Neppl family’s journey. Through NF walks, fundraisers, and events, Tyler and Shaun met families who understood their experiences. O
ne especially powerful memory for Shaun was when Tyler met another young boy with a similar tumor near his eye. “Tyler said, ‘He looks just like me,’” Shaun remembered. “That was something I’ll never forget.”
Over the years, Tyler’s story has also inspired people outside the NF community. From fundraising walks and casino nights to motorcycle rides for NF awareness, Shaun has seen how meaningful it is when people who are not directly impacted choose to care, learn, and act.
Tyler has also had unforgettable experiences through the connections built around NF awareness, including special sports moments with professional athletes and teams. But through it all, what stands out most is not the spotlight; it is the support, encouragement, and community that helped Tyler grow into someone who can move through the world with confidence. 
When asked what helps him through uncertain moments, Tyler shared advice Shaun once gave him: “Keep your mind going. Distract yourself. Try not to dwell on it.”
Now, Tyler is focused on the next chapter. He is looking forward to traveling, including a trip to Belgium for a car race and a summer trip to Canada with friends. These moments represent something meaningful for both Tyler and Shaun: independence, confidence, and the ability to keep moving forward.
For Shaun, Tyler’s journey has changed him deeply. “Do I wish Tyler didn’t have this? One hundred percent,” he said. “But would I change our journey? No. Tyler was put on this earth for a reason. The first person he changed was his dad.”
Through their story, Shaun and Tyler remind us that NF advocacy can take many forms. Sometimes it is standing up in a school classroom. Sometimes it is handing out a wristband. Sometimes it is answering a question instead of letting someone stare. And sometimes it is simply living fully, traveling boldly, and showing the world that NF is only one part of a much bigger story.