The IFOPA offers the ACT (Accelerating Cures and Treatments) for FOP grant program to accelerate the development of new drugs for FOP. The research grant program provides, through a competitive application process, funding to scientists conducting research on fibrodysplasia ossificans progressiva (FOP).
2025 Funders
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, Terri Hendley, FOP Italia, friends and family of Sona Brinkman, and donors to the IFOPA’s In Pursuit of a Cure Day of Giving.
2025 Grant Awardees
The Cellular Basis of Impaired Muscle Regeneration in FOP
Principal Investigator: David Goldhamer, PhD
Institution: University of Connecticut
Country: United States
Award Amount: $75,000
Project Description:
The Goldhamer Lab studies why people with FOP form bone in places where it shouldn’t, such as inside muscles. Using special mouse models created by Dr. Goldhamer's lab, they examine which cells initiate this abnormal bone growth and what signals drive them to behave this way.
One area that hasn’t been studied enough is how this extra bone affects the muscle’s natural ability to repair itself. In FOP, the normal muscle-healing process may be hijacked and redirected toward bone formation instead.
With this ACT for FOP research grant, Dr. Goldhamer aims to determine whether muscle stem cells in FOP are damaged or receive the wrong signals from nearby cells during flare-ups. Understanding this will help us learn how HO starts and may eventually guide new treatments.
Novel Ultrasound Technologies to Assess and Treat FOP Flares
Principal Investigator: Julianna Simon, PhD
Institution: Pennsylvania State University (Penn State)
Country: United States
Award Amount: $75,000
Project Description:
The Biomedical Acoustics Simon Lab (BASiL) develops new ultrasound tools to better diagnose and treat different medical conditions. In this ACT for FOP research grant, Dr. Simon is working with Dr. Dan Perrien at Emory University to see how well standard ultrasound (regular black-and-white imaging plus color Doppler) can detect and track early bone formation in FOP mice.
Dr. Simon's lab will also test whether a special type of ultrasound—focused ultrasound—can interrupt the early steps of abnormal bone growth and possibly prevent more bone from forming later. They have already had success using these ultrasound methods in another model of abnormal bone growth, where they were able to spot early bone changes and lessen the severity of the condition with focused ultrasound treatment.
The goal of their research grant is to show that these same ultrasound techniques can work in a genetic model of FOP, which could help move them toward future testing in people.
