In Columbia, Missouri, the Walk4NF has become something families count on each year. It’s where people show up, find each other, and realize they’re not the only ones navigating life with NF.
That kind of connection didn’t always exist for Christina.
Neurofibromatosis has been part of her family for generations. Her grandmother had it. Her father had it, along with several of his siblings. Growing up, though, there wasn’t a name for it. There were just “bumps” and brown spots. It was something people noticed, but didn’t really talk about.
It wasn’t until a high school biology class that Christina first saw the words café-au-lait spots and neurofibromatosis. For the first time, there was language for something she had seen her whole life.
Later, when her son developed scoliosis around age 11, doctors connected it back to NF. Even then, it didn’t feel like a dramatic turning point. She had already spent years seeing similar signs in her family. In a way, she had learned to accept it before fully understanding it.
What she didn’t have was connection. So, she went looking for it.
In 2008, while taking a biology class at the University of Missouri, Christina had to do a report on a genetic disorder. Without hesitation, she knew she wanted to do it on Neurofibromatosis, even if it meant she had to get an exception if it wasn‘t on the “approved list of topics.” Doing this report is what drove her to find out all that she could about NF, and it continued even after the report was turned in. During the same time frame, she jumped on the boat and created a Facebook page. When she realized she could look for people with similar backgrounds or likes, she started connecting with people from all over the world with NF. Then, in 2010, she found the Inspire.com site and found more people with NF.
That led to something more. She wanted to bring people together locally by creating opportunities for families to meet in person. In 2011, one of the first events was “Meet Me at the Zoo” in St. Louis. It was simple, but it gave people a chance to talk and be around others who just got it.
That was just the beginning!
Over time, those small efforts grew into something bigger. In 2019, it became the first Walk4NF in Columbia. Christina laughs when she thinks back on that first year. “We didn’t really know what we were doing,” she says.
They figured things out as they went. Where to hold it. When to schedule it. How to get people to show up. They wanted something visible and something that made it easier for others to find them. Eventually, they landed on Stephens Lake Park, a space that gave them room to grow.
The first walk raised $1,400.
Since then, the walk has grown year after year. Not just in size, but in reach. Christina sees it in small moments. Someone spotting a flyer at the gym. A parent showing up after a new diagnosis. Conversations that start with, “I didn’t know anyone else had this.”
“I’m not doing it for me,” she says. “I’m doing it for my grandkids. I’m doing it for the kids who are just finding out. I want them to know they’re not alone.”
She stays connected with families, shares NF Midwest resources, and helps make sure people know where to turn. Over the years, she’s also helped grow the walk, adding new pieces and building it into something the community takes pride in.
One moment that stands out to her is when a Missouri team raised the most money and earned the chance to choose the NF Midwest T-shirt colors for the next walk. It showed how much the local community had stepped up!
This year, they’re hoping to add a live band. It’s just one more way to make the day feel welcoming and full of life.
Looking back, Christina sees how much this has changed her. “It’s taught me you can do anything you put your mind to,” she says. She knows getting involved can feel like a lot at first. Time, experience, knowing where to start. All of it can hold people back.
But it doesn’t have to be complicated. You show up. You meet people. You take one step.
That’s how this started.
And now, it’s something families return to year after year because they know they’ll find people who understand.
Responses