Hi, I’m Whitney Weldon, and I’m honored to serve as Campaign Ambassador for this year’s In Pursuit of a Cure campaign: Journey to the Future.

I’m 34 years old, and I was diagnosed with FOP when I was nine. Looking back, it’s truly remarkable to see how far our small community has come.

This year marks 20 years since the discovery of the FOP gene—a breakthrough that changed what was possible. Since then, we’ve seen incredible progress. While science doesn’t happen overnight, each discovery, each clinical trial, and each step forward reminds me that the future feels more reachable than it did when I was first diagnosed.

When I was a child, my world felt small. FOP can be complicated, unpredictable, and scary. But today, I have more hope than I ever imagined possible. Hope has carried me through the difficult days, and it continues to carry me forward.

As we begin this year’s campaign, I find myself thinking not only about what’s been accomplished over the past 20 years, but about what the next 20 years could hold.

She also offers encouragement to anyone who feels hesitant about getting started: “Every dollar counts. Don’t feel you need to raise a large amount because if a lot of people fundraise, it can add up.”

For Jon Krisman, an FOP dad, fundraising is about both hope and community. His family’s annual chili cookoff has become a favorite tradition, bringing together friends and neighbors while raising awareness and funds for FOP.

Jon says, “We look at the impact our fundraising is having on the FOP community, and that helps us get through the hard days and gives us the drive to continue pushing forward towards the ultimate finish line of a cure.”

Sue Dupre, an FOP aunt, reminds us that fundraising doesn’t have to be elaborate to be meaningful. Through her annual appeal, she supports her grandniece and helps others become a part of the mission.

“ANY money I’m able to raise is a benefit to the FOP fight,” Sue says. “My quiet money is just as helpful as money raised in other ways.” Her steady commitment proves that consistency can be just as powerful as creativity.

For Megan Huseland, an FOP mom, the motivation is deeply personal. “I organize a fundraising campaign, ultimately, for Callie,” she shares. “I will do whatever I can to raise awareness and help raise funds to find a cure.”

She encourages others to take that first step because “You never know how your story might touch someone else and who your story might get shared with.”

For 13-year-old Cade, who lives with FOP, fundraising looks like a cup of coffee. Each year, Cade’s family turns their home into Cade’s Coffee Bar, growing from $500 in their first year to $3,500 last year—all raised from selling single cups of coffee, and all going toward FOP research, while helping Cade learn to own and share his story.

Cade’s mom Wendy encourages other families not to feel pressure to go big: “Don’t feel like you must host and manage a huge event. We intentionally started with what we could handle in our schedule.”

Have questions or want to chat about your ideas? Contact Charles Hunsaker, Philanthropy Manager, at [email protected] or +1 (816) 200-0082.