Cure FOP 2023

IFOPA In Pursuit of a cure.

Our work to find treatments and a cure for FOP never stops. We’re on this path together for as long as it takes. Together, we are Relentless…

Please help us fund the next phase of FOP research with your gift today. The first $25,000 will be MATCHED to double your impact!


Live FOP Research Update Webinar
AUGUST 30, 2023


As part of the In Pursuit of a Cure 2023, the IFOPA is hosting an exclusive webinar led by Danielle Kerkovich, PhD, IFOPA Director of Research Development and Partnerships.

This is the first research webinar with live question-and-answer session hosted by the IFOPA in two years—you won't want to miss it!

Live translation in Spanish and AI (artificial intelligence) translation available in 27 languages.

Fueling the Next Phase of Transformational FOP Research

The next phase of gene therapy research and the ACT for FOP Grant Program is on the horizon. This research is essential — and it requires a serious investment. Danielle and guest FOP researchers Shailesh Agarwal, MD; Julia Alterman, PhD; and Jae-Hyuck Shim, PhD will bring you up to date on what’s happening in the live webinar. You’ll hear about:

  • The potential to treat flares as they happen
  • What it means to add healthy FOP genes and silence the broken ones
  • Manipulating the immune system to fight FOP
  • Grant funding priorities that target pain in FOP, muscle regeneration and more

While we are so excited for results from the ongoing clinical trials which are working to create a world without progressive disability, our work is not done. To end FOP, we need investments in gene therapy to stop FOP where it starts, to slow the harmful effects of an overactive immune system, and to lessen the pain caused by this disease.

– Danielle Kerkovich, PhD, IFOPA Director of Research Development and Partnerships

The Power of Gene Therapy

We're Making Progress with Gene Therapy for FOP

So far, gene therapy research has:

Demonstrated gene therapy can work in FOP mouse models and human cells

Treated human and FOP animal model cells at risk for becoming bone while avoiding other cells

Determined ways to deliver gene therapy for FOP into the body

Question Mark

What is the next groundbreaking FOP discovery? We need your support to get us there!

ACT for FOP Grants 2023

When the ACT (Accelerating Cures & Treatments) for FOP Grant Program was launched in 2015 to fund research and development of safe and transformative FOP therapies, there were no clinical trials for FOP treatments.

Today, we have five clinical trials in process with additional drugs being researched for off-label use.

The IFOPA has spoken with advisors in FOP academic research, clinical care, drug development, and regulatory science to discover where to focus our current efforts. Based upon these conversations, we've expanded the program to cover three areas: basic science, translational science and open-source research tools and data.

Learn more about the specific types of projects prioritized for 2023 funding at

in the Relentless Pursuit of a Cure

QUESTIONS about starting a fundraiser? Contact Cathryn Roys at [email protected] or +1 843-709-3244.

We are determined to find a cure for FOP.

And we know you are, too! Our personal fundraising pages provide an easy way for you to invite your friends and family to support the relentless pursuit of treatments and a cure for FOP. Set up your page today with this helpful step-by-step guide.


More Ways to Get Involved

We've created plenty of ways for you to invite others to join you for In Pursuit of a Cure 2023!
Be sure to use the hashtag #curefop when posting or sharing.

  • Get your I Am Relentless t-shirt.
  • Share social posts about In Pursuit of a Cure with your family, friends, neighbors and co-workers. Tag the IFOPA and use the hashtags #cureFOP and #Relentless.
  • Share our 2023 videos available at on the In Pursuit of a Cure 2023 playlist ... new videos will be added throughout August.

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