From Sun Escape to the Boardroom

Clint Stuhlsatz and Theo MacGregor forged a friendship over their EPP at Sun Escape. Now the 15 year olds are taking their bond and enthusiasm to the Shadow Jumpers’ board of directors in a co-chair role.

Since its board of directors was established in 2021, Shadow Jumpers has reserved one of its seven official board seats for a youth representative. For an organization dedicated to improving the lives of photosensitive children and their families, ensuring that young people have a voice in the decisions shaping their community has always been a priority.

After all, who better to help guide an organization serving photosensitive kids than the kids themselves?

“So much of how a person approaches their photosensitivity throughout life can be traced back to how they viewed it and lived alongside it at a young age,” Shadow Jumpers Chairman Craig Leppert said. “It has always been crucial to us that we get a kid’s opinion early when it comes to our programming, social media, apparel, fundraising and everything in between. Their perspectives are constantly evolving, and we want to make sure our organization evolves alongside them.”

For the first time, however, that seventh board seat will be shared by two youth representatives. And as it turns out, they already make a pretty great team.

Shadow Jumpers is excited to introduce 15-year-old best friends Clint Stuhlsatz and Theo MacGregor as its newest Co-Youth Board Members.

Both diagnosed with Erythropoietic Protoporphyria (EPP), a rare genetic disorder that causes painful reactions to sunlight, Clint and Theo first met in 2025 while attending Sun Escape, the annual sun-safe camp weekend hosted by Shadow Jumpers and the United Porphyrias Association at Victory Junction in North Carolina.

Clint, who lives in Kansas, and Theo, who calls Canada home, quickly formed a friendship that extended well beyond their weekend at camp. Despite living more than a thousand miles apart, the two stayed connected through texting, social media and video games, building a bond rooted in something neither had experienced much of growing up: having a best friend who understood exactly what living with EPP felt like.

“When you're a kid, having no idea someone else outside of your family has it, to finally find a friend, let alone a BEST FRIEND now who also has this disorder, it makes it just as much fun as it is important,” Clint said.

Theo echoed that enthusiasm.

“I’m ecstatic to share this position with Clint. There is no one else I’d want to do this co-chair position with than him.”

A Friendship That Caught Everyone's Attention

When the boys reunited at Sun Escape this past May, their excitement to be together again was impossible to miss.

Whether participating in camp activities, spending time with other campers or simply enjoying the opportunity to be kids without the sun dictating their plans, Clint and Theo brought an energy that quickly spread throughout the weekend.

And the Shadow Jumpers board took notice.

Clint and Theo with SJ chairman Craig Leppert at 2026 Sun Escape Weekend

“Their bond and joy to hang out for a weekend was really contagious with the other kids,” Shadow Jumpers board member Ginger Gonsalves said. “It didn’t matter what the activities were, both of them were going to make it a party, and that made all the campers’ excitement level for the weekend rise.”

According to Gonsalves, their natural leadership abilities weren't lost on Victory Junction's staff either. On more than one occasion, camp staff remarked that the boys had the personalities and enthusiasm to become camp leaders themselves someday.

What stood out wasn't simply their ability to have fun. It was how naturally they made those around them feel included, comfortable and excited to participate.

For a weekend designed to give photosensitive children a place to belong, that kind of influence carries special meaning.

“Craig detailed for us how these boys just GOT IT, similar to how he did back then, and with the same attitude we try to demonstrate across our whole Shadow Jumpers world,” Gonsalves said.

Fellow board member Raaj Kapoor saw the decision as a simple one.

“You want the best and most enthusiastic people in your organization however you can, and figure out the specifics after.”

Two Familiar Faces, Two Full-Circle Moments

While their appointments mark a new chapter for Shadow Jumpers, neither Clint nor Theo is a stranger to the organization's story.

In fact, Clint's connection to Shadow Jumpers goes all the way back to the very beginning.

Clint (left) with his sister Hattie on their SJ vacation to Disney World in 2018

In 2018, Clint and his younger sister Hattie, who also has EPP, became the first children ever assisted by Shadow Jumpers when the organization selected the Stuhlsatz family for an all-expenses-paid, sun-safe trip to Walt Disney World through its inaugural “Light the Moment Sweepstakes.”

That experience helped lay the groundwork for what would eventually become Shadow Jumpers' family assistance programming, which transitioned to its current application-based model in 2021.

Eight years later, one of the first children to benefit from the organization's mission is now helping lead it.

“That first trip will always be extremely important to us at Shadow Jumpers,” Leppert said. “So to now have a kid from our very first family experience sitting on our board, excited to do the work and help shape what comes next, is surreal.”

The moment is even more meaningful considering Clint's mother, Allison Stuhlsatz, has served on Shadow Jumpers' board of directors since its inception in 2021.

For Clint, the opportunity to follow in those footsteps represents just how far things have come.

Theo in full sun protective gear walking with his brother before a football game.

“It means a lot to me,” Clint said. “It's mind-blowing how far Shadow Jumpers has come since I was seven years old with EPP and being part of the first family experience SJ ever sent someone on. Now being asked to come on as a co-youth board member and share our perspective and ideas is surreal.”

Theo's connection to the organization represents a different, but equally meaningful, full-circle moment.

Earlier this fall, Shadow Jumpers featured Theo in an article highlighting his passion for playing high school football while navigating the challenges of EPP. From protective clothing and gloves to carefully managing shade and sunlight exposure, Theo's determination to play the sport he loves despite the obstacles resonated with the community.

But for Leppert, the story hit especially close to home.

“I covered up exactly like Theo to play high school football,” Leppert recalled. “A local sports reporter did a story on me that eventually caught the attention of Dr. Oz, Mystery Diagnosis and ABC News. That exposure indirectly pushed me into advocacy and helped lay the foundation for what would become Shadow Jumpers.” (Archive text of that Digital Sports Inc story can be found HERE.)

Years later, watching another teenager navigate the same challenges, with the same determination, brought that journey full circle.

For Theo, the path to becoming a youth board member has been equally transformative.

“Two years ago, I didn't even know there was someone out there like me and my dad (who also has EPP),” Theo said. “Then getting invited to Sun Escape and making such a bond with Clint and everyone at SJ has made life that much easier and makes me excited to play a role in what SJ has planned in the future.”

Turning Friendship Into Something Bigger

Although their friendship may have helped land them the position, Clint and Theo have much bigger ambitions than simply attending board meetings.

The pair will share the youth board seat through the end of 2027, dividing the responsibilities of four annual board meetings while both being encouraged to participate whenever possible.

More importantly, they'll be tasked with bringing the perspective of today's photosensitive teenagers directly into conversations about Shadow Jumpers' future. And they've already started brainstorming.

The boys recently reunited at the United Porphyrias Association's Porphyria Palooza, where the UPA arranged for Theo to fly in and surprise Clint. Naturally, the reunion included plenty of excitement, but it also gave the new co-board members an opportunity to discuss what they hope to accomplish together.

Among their early ideas are a new social media campaign to rally and inspire the photosensitive community, more opportunities for young people to connect virtually through gaming and other shared interests, and a greater role in developing activities and programming for future Sun Escape weekends.

Their goal is to help create the kinds of connections that made such a difference in their own lives.

For Clint, that means making sure younger children growing up with photosensitivity understand that they don't have to face its challenges alone.

“I hope we can inspire a feeling of pushing forward despite tough days for all of our photosensitive people,” Clint said. “Similar to how Theo and I are there for one another when we need it, I hope we can be that same friend to all of the young people battling the sun when they need someone most.”

Theo offered a message that was just as simple as it was powerful.

“Don't let the sun hold you back is something we hope comes across over the next year.”