When I look back on my ten years with the International FOP Association (IFOPA), what stands out most is not a single moment or milestone, but an intersection: incredible families, extraordinary scientists, dedicated healthcare providers, committed pharmaceutical partners, faithful volunteers, and hard-working staff who show up every day with compassion and grit. That intersection is where this work lives. It’s what you do for your family. And over the past decade, it’s what we’ve done together as an FOP family. 

The past ten years are not the story of one person or organization. It’s a collective story — built across years, continents, setbacks, and breakthroughs — of a community determined to change what it means to live with fibrodysplasia ossificans progressiva (FOP). 

HOPE 

One of the earliest moments of hope I carry with me goes back to 2016 in my first year. IFOPA funded a research grant with Dr. Paul Yu at Brigham and Women’s Hospital and Harvard Medical School to test whether a repurposed drug, saracatinib, might be effective in FOP. At that time, it was an idea — one grounded in science, but still unproven. That grant generated data. That data led to deeper investigation. And that investigation led to a clinical trial. 

Today, the STOPFOP trial has been running in Europe for more than five years, with 17 participants and researchers who have shown extraordinary commitment. 

Hope also shows up in quieter moments. I think of Cade and AJ, two boys I met years ago, now teenagers, who recently helped a nervous five-year-old prepare for his Ask-a-Doctor meeting at Family Gathering last fall. They took him under their wing, helped him feel comfortable in the space, and provided support so he didn’t feel alone. Watching them, I witnessed maturity, compassion, and confidence. I saw hope — not only for treatments, but for a future led by capable, empathetic young people who understand this disease from the inside. 

Hope comes from unexpected places, too. From a group of students at Pine Springs Academy running an FOP awareness campaign inspired by Amie Darnell Specht’s book Dancing in the Storm. From an anonymous $1 million unrestricted gift that arrived in 2019. From people like 17-year-old Carrie Hoberg, who has been a loyal donor since she was 8. She started giving after watching a documentary about a young girl with FOP — even though she’s never personally met someone living with FOP. These moments remind me that hope multiplies when people are moved to act. 

We connect with FOP families in many ways — mostly by email or social media. Sometimes they reach out to us first, sometimes we see them commenting on our posts and we reach out to them. Recently, we've made connections with families in Algeria, Azerbaijan, and Uzbekistan. It tells me that we are successfully getting the word out that we are here for families around the world. Last year we connected with three families in Turkey and were able to connect them with another family in Turkey. Connection and support were the initial goals of Jeannie Peeper and the ten Founding Members, and it makes me so proud to see this core part of who we are as an organization continuing today.

RESILIENCE

Resilience is woven into the foundation of IFOPA. I think often of our Founder, Jeannie Peeper, and ten Founding Members including Nancy Sando, Monica Anderson, Jack Sholund, and Shay Williams who I’ve been honored to meet. They, and other Board Members and volunteers, built this organization at a time when little was known, resources were scarce, and the road ahead was unclear. This was a time before the internet, email, or Zoom meetings. Connection relied on mailed letters, a printed FOP Connection newsletter, and phone calls, when every long-distance call came with a cost (literally). Everything we do today stands on their shoulders. 

I’ve learned what true resilience looks like from families who have lost loved ones to FOP and yet remain deeply engaged in our community. I met Mike Man in 2016. His son Spencer, one of the IFOPA’s Founding Members, passed away in 1991 at age 14. Twenty-five years later, Mike took my call, offered advice, and continues to personally reach out after newsletter or research updates. He, and countless others, remind me that resilience can mean staying connected, even through grief. 

Resilience has shaped how I lead. There have been setbacks that have tested us deeply. I remember standing in front of our Board of Directors, explaining that to fill all active FOP clinical trials we would need roughly one-third of the known global FOP population to participate, 364 people. I called experts across the rare disease space looking for guidance. No one had been in quite this situation before. 

And yet, this community did it. Families across the world made brave, personal decisions to enroll. At the end of last year, devastating news arrived: one trial failed to meet its endpoints and would close. It was crushing to many. But resilience doesn’t mean avoiding disappointment; it means continuing anyway. Today, multiple trials are moving toward published results. We keep going because our mission demands it. 

JOY 

Joy may seem like an unexpected word in rare disease work, but it’s real, and very essential. Some of the most joyful moments of my career are tied to progress in bringing treatments and a cure to the FOP community. In 2016, I organized my first patient advisory board for Regeneron Pharmaceuticals, bringing together individuals and families willing to share their lived experiences. These included Jasmin Floyd, Holly LaPrade and her husband Tim, Anthony Barbera and his dad Joe, Sophia Forshtay and her dad David, Will Hayes and his mom Sue, and Daniel Licht and his parents Jeri and Peter. Sadly, two of the people on that advisory board — Jasmin and Anthony — passed away as a result of FOP. Nine years later, I sat in a meeting as Regeneron prepared to file a New Drug Application with the FDA for garetosmab. The company’s Co-Founder and Chief Scientific Officer George Yancopoulos came to the meeting to thank the IFOPA for our partnership. That arc, from listening to lived experience to regulatory review, is profound. 

Other moments of joy have nothing to do with drug development. In 2024, while in Europe for the FOP Drug Development Forum, I met Valentin Bunjaku, a recipient of the IFOPA’s Harold and Elaine Quality of L.I.F.E. Award. The grant helped him purchase an adaptive van. When he offered to take me for a ride, I saw exactly what joy looks like in action — freedom, dignity, possibility. 

Joy also lives in relationships. I think of lunches, long phone calls, looking through old photos, and late-night conversations in hotel lobbies with researchers like Dr. Fred Kaplan, advocates like Amanda Cali,  our Founder Jeannie Peeper, and families who opened their hearts and homes and shared their lived experiences with FOP long before I fully understood the responsibility of this role. 

LOOKING AHEAD

There are times in this work when we celebrate and we cry together. Times when we witness disease progression, loss, or heartbreak. We allow space for that. We step away when needed. And we come back, because this community teaches us how. 

After ten years, I know this: we’ve come a long way, and we still have a long way to go. The experience, knowledge, and trust we’ve built together give us the skills to face what’s next. I could tell so many more stories. It was challenging to choose only a few to share because so many people — people living with FOP, families, donors, fundraisers, researchers, healthcare providers, pharmaceutical partners, leaders of other FOP national organizations, volunteers, and staff — have shaped this journey. 

Thank you to those who hired me, especially Board Chair Paul Brinkman, Lori Henrotay and her daughter Carli, and IFOPA Research Director Betsy Bogard — the first three FOP families I met in person. Thank you to Jeannie for trusting me with this organization. Thank you to our Board, our volunteers, and our extraordinary staff. To the IFOPA team — thank you for being the hardest-working group of people I’ve ever known. And thank you to this resilient, beautiful community. 

As we look to the future, I remain grounded in the belief that collective work changes what is possible. I’d love to hear your reflections on the progress of the last ten years, too. Please reach out to me at [email protected] or +1 (816) 809-2772 (also available on WhatsApp). 

We move forward, together.