The journey toward finding treatments and a cure for fibrodysplasia ossificans progressiva (FOP) isn’t measured in miles. It’s measured in discoveries.

This journey is exactly why IFOPA launched the ACT for FOP (Accelerating Cures and Treatments) grant program in 2015. Created by the Brinkman family in partnership with the IFOPA, the program was designed to help researchers pursue bold, innovative ideas that could lead to new therapies—and ultimately, a cure.

“Our goal was to help the IFOPA start a competitive research grant program focused on the development of safe, transformational FOP drug treatments,” shares FOP dad Kyle Brinkman.

Since then, supporters like you have helped transform that vision into one of the IFOPA’s most impactful research programs.

Over the past decade, ACT for FOP has funded 24 competitive research grants, totalling nearly $1.4 million at 16 academic institutions and one biotechnology company across the United States, Canada, the United Kingdom, Spain, Israel, and the Netherlands. In 2026, the program will award two grants of $100,000 each to accelerate the next generation of FOP research.

Each one of those grants represents more than funding. It represents another step forward on the journey.

Your gifts become tomorrow’s treatments

The ACT for FOP program doesn’t simply award grants—it invests in the strongest science.

As IFOPA Research Director Mark Hamilton, PhD, explains:

“In rare disease research, every dollar matters. A competitive review process helps ensure those dollars support the science with the greatest potential to improve patient lives.”

That process has already produced remarkable results.

One of ACT for FOP’s earliest grants, awarded in 2016 to Dr. Paul Yu at Brigham and Women’s Hospital and Harvard Medical School, explored whether temporarily blocking ALK2 activity after surgery could prevent additional bone formation while allowing normal healing.

The findings from that research became the foundation for the STOPFOP clinical trial, where people living in Europe have been evaluating the drug saracatinib. What began as a single research idea evolved into a clinical trial with the potential to change patient care.

That’s the power of early-stage research.

Last year, ACT for FOP supported Dr. Juli Simon at Penn State as she explores an entirely new approach using ultrasound technology. Her team is investigating whether ultrasound could one day detect abnormal bone formation earlier than current methods, and perhaps even interrupt the disease before new bones develop.

“We’re really excited to take what we’ve learned…and see what happens when we use a more genetically relevant animal model,” Dr. Simon shared during a recent IFOPA Research Fireside Chat.

If successful, this work could someday provide doctors with a faster, more accessible way to monitor flare-ups and open an entirely new avenue for treatment.

That possibility exists because you, IFOPA supporters, chose to invest in an idea before anyone knew where it would lead.

We also recently sat down with Dr. David Goldhamer at the University of Connecticut, who has spent decades studying FOP. With his recent ACT for FOP grant, Dr. Goldhamer is studying how the stem cells responsible for muscle regeneration (satellite cells) are affected by the mutation in ACVR1 that causes FOP, and how signals between satellite cells and FAPs might drive new bone growth and muscle loss.

The next breakthrough starts with you

Research doesn’t end with just one discovery.

Every breakthrough raises new questions. Each promising finding opens another path to explore. Every successful clinical trial began with an early-stage study that someone believed was worth supporting.

This is what makes the In Pursuit of a Cure campaign so important.

Your generosity creates momentum. It attracts new scientists and researchers to the field, giving innovative ideas the possibility to succeed. Your generosity helps move discoveries from the laboratory to clinical trials, and, ultimately, to people living with FOP who are waiting for answers.

This year’s ACT for FOP Grant Program received 32 Letters of Intent from researchers in 10 countries, including first-time applicants from five countries; which was 60% more applicants than our last funding cycle. We’re excited to see what this truly global response brings forward as these innovative research proposals move to the next stage.

The journey to the future is already underway. Together, we’ve helped transform bold ideas into meaningful progress. Now, it’s time for the next step.

Give to In Pursuit of a Cure today. Your gift will help launch the next discovery, accelerate breakthroughs, and bring us one step closer to a future where FOP no longer defines what’s possible.