The Journey to the Future is ready for launch.
A future without FOP is on the horizon—and we're gaining ground.
For every person living with FOP, the stakes are real and immediate. A single flare can turn muscle to bone. Mobility can disappear without warning. But every day carries the hope that the next discovery will change what's possible.
That hope is picking up speed. Research is accelerating, momentum is building, and the destination we've been journeying toward—new treatments and, one day, a cure—is closer than it's ever been. But a launch this important needs fuel. Your generous gift will provide the fuel needed for the next leg of this journey.
“The reality of a cure for genetic diseases is out there, and a cure for FOP is waiting to be developed. As science advances, new research, exploration of various treatments, and a better understanding of FOP move us closer.
We are on this journey together. We build on every journey launched before us…and we will stay on this journey to the very end.”
In Pursuit of a Cure 2026 Chairs
September 15 is our 2026 In Pursuit of a Cure Day of Giving.
This year’s Day of Giving will offer special incentives designed to drive philanthropic support and make your gift go even further. But all gifts made toward In Pursuit of a Cure: Journey to the Future in August and September count toward our $510,000 goal for FOP research.
Your support powers the research driving this mission forward. Every donation, no matter the size, adds momentum to a journey that belongs to all of us—the people living with FOP, their families, the researchers, and supporters like you.
So give now or make a special gift on our Day of Giving (September 15). Either way, your gift helps us as we launch research for a brighter future!
The Next Frontier
We are no longer at the starting line. The question now is not whether we can develop treatments for FOP—it's how we optimize them, get them to every patient, and build toward a cure.
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Reaching the youngest patients
Getting effective therapies to young children before significant bone forms—changing the trajectory of their lives entirely.
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Optimizing how treatments work
Which patients benefit most, how to optimize dosing, and how mobility recovery can be supported—both through medication and potential surgical intervention.
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Combination therapies
Because available drugs act at different points in the FOP pathway, researchers are studying whether combining them could produce even better outcomes.
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Long-term effectiveness
How do treatments perform over time? Researchers are tracking whether efficacy is maintained with extended use and what ongoing monitoring should look like.
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The full picture of FOP
The ACVR1 gene affects more than bone. Understanding its impact across body systems is an important part of improving long-term care.
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Gene therapy and a cure
The most transformative frontier: fixing or replacing the ACVR1 gene itself. We are not there yet, but the tools to pursue it have never been more sophisticated.
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Better monitoring tools
Advanced tools like ultrasound and digital biomarker technologies, such as motion capture technologies to track disease progression and therapy response—enabling earlier intervention and more personalized care.
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Global access
Working toward access for approved drugs and off-label pathways for all people living with FOP, regardless of where they live.
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Building the clinical infrastructure
There need to be providers who can recognize FOP, diagnose it early, and prescribe appropriately. A robust pipeline means nothing if a family can't find a doctor who knows what to do with it.
Together, we are committed to finding a cure.
100% of every dollar raised goes directly to critical research.
The IFOPA is committed to funding research until we find multiple treatments and, ultimately, a cure for FOP. Join us today to invest in a more hopeful tomorrow.
