ACT for FOP Grants

About the ACT for FOP Grant Program

The IFOPA offers the ACT (Accelerating Cures and Treatments) for FOP Grant Program to help enable the research and development of safe and transformative therapies for fibrodysplasia ossificans progressiva (FOP). Since 2015, the ACT for FOP Grant Program has awarded 22 grants totaling more than $1.2 million in the areas of discovery and advancement of therapeutic approaches to FOP.

Research Focus

IFOPA’s Research Committee, Research Priorities Task Force and Board of Directors, each of which is made up of members of the FOP patient and family community, have been working with IFOPA’s Research Director to complete a patient-centric gap analysis and needs assessment to reach treatments and a cure. Together with advisors in FOP academic research, clinical care, drug development and regulatory science, the IFOPA has expanded the ACT for FOP Grant Program to encompass three areas:

  • Basic science
  • Translational science
  • Open-source research tools and data

Basic science is the backbone of all therapeutic development. Hypothesis-driven research that seeks to answer seminal questions, especially those in the following areas, is strongly encouraged:

  • FOP muscle regeneration, as well as tendon and ligament repair
  • FOP-specific pain
  • FOP flare biology
  • The connection between flare-ups and heterotopic ossification

The ACT for FOP program will continue to fund translational science, the advancement of therapeutic approaches to FOP, especially those that investigate a drug or a combination of drugs' effectiveness on:

  • Prevention or loss of heterotopic bone following surgical resection
  • FOP muscle preservation or regeneration
  • FOP-specific pain
  • Life-limiting symptoms of FOP (e.g. pulmonary dysfunction, flare-ups)

The IFOPA has a history of strategic investment in open-source research tools and data that advance FOP research.

  • The FOP Registry collects longitudinal patient-reported outcomes and is available for query.
  • The IFOPA provides open-access FOP mouse models to both academic and pharmaceutical researchers for the study and preclinical treatment of FOP.
  • The FOP Biobank shares biosamples for study and the to-be-developed FOP-induced pluripotent stem (iPS) cell collection will provide a platform for testing hypotheses and medications directly in patient cells.

For the most up-to-date information about these resources, please contact Danielle Kerkovich, PhD, IFOPA Director of Research Development and Partnerships at [email protected] or +1-202-812-6462.

Proposals that use, support, build upon, or create patient-owned research tools and data sets managed by the IFOPA are welcome.

Mechanism of Support

The ACT for FOP Grant Program awards one- and two-year research grants to selected recipients up to a total of $75,000 USD. ACT for FOP grant funds cannot be used for indirect or overhead costs. The IFOPA anticipates awarding multiple grants for the 2023 ACT for FOP Grant Program.

For questions or more information about the ACT for FOP Grant Program, please contact Danielle Kerkovich, PhD, IFOPA Director of Research Development and Partnerships, at [email protected] or +1 202-812-6462.


FOP independent researchers with a doctoral degree (MD, PhD or equivalent) in any country are eligible to apply. The IFOPA does not fund training fellowships at any level.

Proposal Evaluation Process

The IFOPA uses a hybrid structure for its scientific merit review processes – a standing board of experts in FOP research and development together with ad hoc reviewers chosen for their specific expertise in relation to individual proposal submissions.


The submission of proposals and the identity of applicants is sensitive information that is treated by the IFOPA and the Scientific Advisory Board as confidential. Winning applications will be announced publicly, but other applications will remain confidential.

2023 Application Schedule

Announce 2023 Grant Program  July 14, 2023
Letter of Intent (LOI) Due September 1, 2023, 11:59:59 pm ET
LOI Notifications Week of September 25, 2023 
Proposals Due December 18, 2023, 11:59:59 pm ET
Proposal Notifications April 1, 2024

How to Apply

The IFOPA uses Proposal Central. Please consult and follow the LOI instructions at Proposal Central to apply. Click the Login Now button to log in or create a new account. 

Scientific Advisory Board

Applications are reviewed by a standing Scientific Advisory Board together with ad hoc reviewers chosen for their expertise specific to each application.

The Standing IFOPA Scientific Advisory Board includes:

Vicki Rosen, PhD, Chair
Department of Developmental Biology
Harvard School of Dental Medicine
Learn more about Dr. Rosen

Marie Demay, MD
Endocrine Division
Mass General Research Institute
Learn more about Dr. Demay

Karen Lyons, PhD
Department of Molecular, Cell and Developmental Biology
UCLA/ Orthopaedic Hospital Department of Orthopaedic Surgery
Learn more about Dr. Lyons

Michael Whyte, MD
Division of Bone & Mineral Diseases
Washington University School of Medicine
Learn more about Dr. Whyte

Michael Zasloff, MD, PhD
Department of Surgery
Georgetown University Medical Center
Learn more about Dr. Zasloff



The ACT for FOP Grant Program was launched in 2015 by friends and family of Sona Brinkman. Today, others who are passionate about curing FOP have joined them in funding the ACT for FOP Grant Program with lead gifts from: Joshua’s Future of Promises, FOP Australia, FOP Friends, FOP Italia, Canadian FOP Network, friends and family of Sona Brinkman, Terri Hendley, and donors to the IFOPA’s In Pursuit of a Cure Campaign.

Past ACT for FOP Grant Recipients



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