Living with FOP can change many aspects of daily life, but it doesn’t change the desire to create, learn, and connect. Across the FOP community, individuals are finding unique ways to express themselves through hobbies that bring purpose and fulfillment, and sometimes even unexpected opportunities to support others.

Meet two individuals living with FOP, Erin Danzer and Joe Suchanek, who show how FOP can spark new creativity and creations.

Finding a creative voice

For Erin, creativity has always been a constant companion.

“I’ve always found writing as a creative escape,” she shares. “I remember getting my first journal in elementary school, and since then, I’ve kept up journaling as a hobby.”

Over the years, journaling evolved into a broader love of creative expression. Today, Erin explores different forms of journaling and creates handmade artwork.

She also makes friendship bracelets that have become a familiar sight at the IFOPA’s Family Gatherings. Inspired by bracelets she had seen at festivals and events, Erin began creating FOP-themed friendship bracelets for Family Gathering attendees to take home as keepsakes.

“The friendship bracelets started out as just a fun idea,” she said. “They’re a great way to spread awareness. I think they’re a great fashion accessory, too!”

Creating connection through creativity

For Erin, creativity isn’t just about making something beautiful—it’s about connection. Through her writing and artwork, she hopes others living with FOP feel understood and less alone.

“I try to be honest and transparent when I openly share about how living with FOP makes me feel,” she says. “It’s really important for me that others can relate to what I’m feeling, especially if they can’t put it into words themselves.”

That sense of community is what keeps her coming back to her creative pursuits. Whether she’s writing, crafting, or creating gifts for friends and family, Erin sees creativity as a way to give others something meaningful.

“FOP has taken a lot of my independence from me,” she says, “but I’m still able to make art and share it with others, and I pride myself on that.”

Today, she’s also challenging herself in new ways, including working toward writing a memoir and rediscovering her love of reading as a source of inspiration and creative growth.

Turning curiosity into creation

While Erin channels her creativity through writing and art, Joe has found his outlet through technology and making things.

Over the years, Joe has explored being a YouTube creator, podcasting, and 3D printing. These hobbies have allowed him to stay engaged and channel his creativity through difficult periods, including recovering from a significant hip flare.

“At the time, I was literally doing nothing,” Joe recalls. “I like being hands-on with things, so it was something to keep busy.”

That willingness to experiment led him down several paths. Through podcasting and content creation, Joe discovered the satisfaction of building something from scratch and sharing it with others.

“It’s nice to create something yourself and say, ‘This is mine,’” he says. “The important thing is to be authentic to yourself.”

Exploring new possibilities 

Joe’s interest in 3D printing eventually sparked ideas for adaptive tools that could potentially support people living with FOP.

“I had the ideas for many years,” he explained. “The creation process is much cheaper and easier now. It was fun to prototype and finalize the designs.”

For Joe, the outcome was never the most important part. The value came from starting, learning new skills, and seeing where his curiosity might lead.

The philosophy has become the advice he most often shares with others.

“Just start,” Joe says. “Many people don’t start, and then live with regrets. You never know what’s down the road that will lead to something else.” 

More than a hobby

Although Erin and Joe pursue different interests, their stories show the importance of finding activities that allow them to express themselves, challenge themselves, and connect with others.

Whether it’s a handwritten journal, a friendship bracelet, a podcast episode, or a 3-D printed prototype, hobbies can create purpose, build confidence, and open new doors.

As Erin and Joe demonstrate, the most meaningful journeys can start with a simple idea, a commitment to authenticity, and the willingness to explore what’s possible.