Before Adam Spisak committed to running his first marathon for the NF community, he made an even bigger commitment, to be a father who shows up every day for his daughter, Emily. When Adam talks about Emily, everything else fades into the background. “She deserves the best version of me every single day,” he says. 

That belief is what’s carrying him to the starting line of the 2026 Pittsburgh Marathon taking place on May 3, where he’s running with a goal of raising $2,600 for neurofibromatosis (NF) research and for families like his own. To up the ante, he has set an incredible goal of completing his first ever marathon in three hours. 

Because for Adam, this race isn’t just about miles, it’s about showing his daughter what it means to face something hard and keep going anyway.

The Kind of Family That Faces Things Together 

Adam describes his family as close, resilient, and deeply connected. 

“We’re a family that leans on each other through everything,” he shared. “We support one another, we laugh a lot, and we don’t take time together for granted.” Their perspective developed from some bumps they faced, and overcame, together. From the very beginning, Adam and his wife’s parenthood journey included unexpected challenges such as medical complications during pregnancy, an emergency delivery, and Emily spending her first days in the NICU. It was not the start they imagined, but, it was the start that shaped them. It prepared them for Emily’s later diagnosis of NF1 when Adam and his wife were once again asked to face uncertainty with resiliency and hope.

The Moment Everything Changed

At first, the café-au-lait spots on Emily’s skin didn’t seem like anything unusual. “They just looked like birthmarks,” Adam remembers. Then came the specialist appointments. The genetic testing. The wait. And finally, the diagnosis. 

“There was shock, uncertainty, and a lot of questions,” he says.  Like many parents, they searched for answers late at night. They wondered what the future might hold. They asked themselves whether they had done something wrong even though they hadn’t. 

But Adam’s family isn’t one that stays stuck in fear. Instead, they made a decision. They would move forward together.

What NF Changed About Fatherhood 

Adam says NF didn’t change how much he loved being a dad. It changed how intentionally he lived it. “There’s a lot you can’t control with NF,” he explains. “But you can control how you show up.”  

That mindset shapes everything now. When work ends, it ends. When Emily wants to play, he plays. When there’s time together, he protects it. Because as Adam describes it “fatherhood isn’t something you do occasionally. It’s something you show up for every single day. Every moment counts.” That belief cemented itself at the core of the Spisak family after Emily’s diagnosis. Not because NF changed who Emily or Adam are but because it reminded him just how precious time together already was.

The Lessons Emily Teaches Without Even Knowing It 

Emily may only be two years old, but she’s already shaping how her family sees the world. “She’s sweet, funny, and full of life,” Adam says. “Because of her, we’ve learned to focus less on the ‘what ifs’ and more on the present.”  

While medical appointments, scans, and uncertainty can feel overwhelming, Emily reminds them what matters most, blueberry muffins after appointments, games of pretend, and laughter at home. 

“She doesn’t think about the future the way we do,” Adam explains. “She’s thinking about who gets to be Dora and who gets to be Boots.” For this, Adam allows Emily’s mentality to guide him. Instead of worrying about what NF might bring, Adam chose to focus on how he shows up as a dad every day. 

Why He Chose the Marathon 

When Adam decided he wanted to participate in raising awareness about NF and give back to the NF community, he knew he needed something that reflected what this journey really felt like to him. He chose a marathon because, just like NF, distance running is not something you face all at once. Instead, it is something you take step by step, over and over again. 

“A marathon represents consistency, perseverance, and mental toughness,” he shared.  Training happens before sunrise. It happens quietly. It happens with the support of his wife and daughter behind him every mile. “In a lot of ways, this is something we’re doing together,” he explains. And in many ways, that’s exactly what living with NF looks like too.

Showing Emily What Strength Looks Like 

Adam often talks about the message he hopes Emily carries with her as she grows up: You can do hard things. 

“Right now, I just hope she’s having fun and feels proud,” he says.  But someday she’ll understand what this race really meant. She’ll understand the early mornings filled with miles of running. The discipline and the reason fueling it. The commitment necessary to pursue a path where the end is not always in sight. She’ll understand that her dad wasn’t just running a marathon to check it off a bucket list. He was running for her. 

Emily’s third birthday comes just days after race day. For Adam, that timing makes the moment even more meaningful. At the end of it all, what matters most is simple: being there, celebrating together, and continuing to show up as her dad in any way she may need.

Running for More Than One Family 

Adam is quick to say this journey isn’t about him alone. “This isn’t about me; it’s about all of the kids and families living with NF,” he says. Families who have NF as part of their reality are waiting for answers and navigating uncertainty. Families who are hoping for better treatments and, one day, a cure. 

 How You Can Support Adam’s Run 

Adam believes this race is just one step in a much longer journey. 

“This doesn’t stop at one race,” he says. “The goal is bigger than any one effort.”  

You can help move that goal forward by: 

  • Sharing his story, over these next 5 weeks leading up to the marathon, May 3 (Marathon Day), we’ll be giving you updates on Adam’s training and progress on our social media, follow along on his journey to cheer him on and repost to spread the word about NF!  
  • Raising awareness about NF by talking about it, sharing stories, and involving people in our work towards a discovering a cure.

Sometimes, the most powerful thing we can do for someone we love is show them what courage looks like in the little moments of playing pretend before bed or in the big moments when you lace up your shoes to run a marathon towards a future where no family has to face NF alone.