Letter from Nadine Großmann, IFOPA Board Chair 

As I sit down to write this, I feel an overwhelming sense of gratitude, pride, and hope. 

This year’s FOP Awareness Month is unlike any other. We are not only raising awareness—we are commemorating the 20th anniversary of the discovery of the FOP gene. From March 31 through today, the first episode, second episode, and third episode of the IFOPA’s 12-part documentary series Journey to Discovery: A Breakthrough Built on Hope were released, capturing a story that is so deeply meaningful to me, and to all of us.

When I think about this moment, I feel emotional. For the first time, the full story of how everything came together—the people, the persistence, the puzzle pieces—is being preserved in one place for future generations. That feels historic. 

Twenty years ago, I had not yet been diagnosed. I was experiencing my first symptoms, undergoing surgeries, and like so many others, searching for answers. Back then, we didn’t know the gene. We didn’t have the clarity that families do today. What feels “known” now was once completely uncertain. 

That’s why this series matters so much. It reminds us that what we have today was built through an extraordinary effort. It brings to life the dedication of the families and researchers who traveled across countries, who gave their time, who shared their stories and blood samples, to help solve a mystery. 

There are so many people whose contributions must never be forgotten. Their work laid the foundation for everything we have today. This series is a way to recognize and thank those who came before us. 

A personal perspective: From community member to FOP researcher

My own journey in the FOP community has shaped how I see this moment. 

I am now involved in many ways as a person living with FOP, an FOP researcher, the IFOPA Board Chair, Vice Chair of FOP Germany, and through my work with the broader global rare disease community. And through this lens, I have gained a much deeper appreciation for just how difficult the gene discovery truly was.

Twenty years ago, the technology we rely on today simply did not exist. Identifying a gene like ACVR1 under those conditions was an extraordinary scientific achievement. And now, having worked in the very lab where that discovery took place, I understand more clearly what it took—years of persistence, collaboration, and belief. 

What stands out most to me is that this was never the work of one person. It was a global, collaborative effort of families, scientists, advocates, and volunteers all united by one shared goal: to find a cure for FOP. 

The discovery of the gene changed everything. Without it, we would not have a target. Without a target, we cannot develop treatments. That single breakthrough opened the door to the clinical trials we see today. It brought new researchers into the field. It sparked interest from pharmaceutical companies. It created momentum.

But it’s important to remember: this progress did not happen overnight. It took decades of work, fundraising, advocacy, and unwavering commitment. 

For those who are newer to our FOP community, I hope this story provides perspective. What feels “established” today was built step by step, through determination and resilience. And it continues to require all of us.

Looking ahead: Carrying this legacy forward

As we begin FOP Awareness Month, I feel more hopeful than ever, and also deeply aware that our work is not finished. 

The discovery of the gene was not the end. It was the beginning. 

Today, we have multiple clinical trials underway. We are exploring different approaches, including gene therapy. Research takes time. We are learning more with every study, every patient, and every year. 

At the same time, we are reminded that FOP is complex. It will not be a one-size-fits-all solution. Treatments may look different depending on age, progression, and individual experience. There is so much we need to understand, and that is why continued research is so critical.

Alongside research, awareness remains just as important. 

This month is our moment—to be loud. To step outside of our comfort zones. To share our stories not just within our communities, but beyond them. Be loud for those who cannot or choose not to. Whether it’s hosting a small event, talking to your workplace, posting on social media, or simply starting a conversation . . .  every action matters. 

Small sparks can become big fireworks. 

What gives me most hope, more than anything, is our community. The people. 

This community is truly special. It is passionate, dedicated, and deeply connected. It feels like a family—because it is. People give their time, their energy, their hearts, even while navigating the challenges of FOP in their own lives. That is something extraordinary. 

We are strong because we are together. 

So as we mark this milestone anniversary, I invite all of you to join in—watch the series, share it widely, honor those who came before us, and help carry this story forward. New episodes will be released throughout the month leading up to Global FOP Awareness Day on April 23. You can find all episodes at ifopa.org/journeytodiscovery and sign up for episode alerts here.

Let’s make this FOP Awareness Month as powerful as possible. 

Let’s be one voice. 

And let’s carry this legacy forward, toward the cure, together. 

Sincerely,



Nadine Großmann
IFOPA Board Chair