The IFOPA funds two FOP grant programs in addition to more than $800,000 in research grant funding at the University of Pennsylvania. This amount includes proceeds from the Finding a Cure gala which funds the Ashley Martucci FOP Research Fund at UPenn.
IFOPA ACT (Accelerating Cures and Treatments) for FOP Grant Program
About the ACT for FOP Grant Program
The IFOPA offers the ACT (Accelerating Cures and Treatments) for FOP grant program to help enable the development of safe and transformative therapies for FOP. The research grant program provides, through a competitive application process, funding to scientists conducting research on fibrodysplasia ossificans progressiva (FOP).
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, friends and family of Sona Brinkman, and the Phoebe Snow Foundation.
Research grants focus on the discovery and advancement of therapeutic approaches to FOP, including:
- Potential new therapies that either provide a novel approach to treating FOP or have convincing animal data to warrant further research;
- Combination treatments that may provide better efficacy, allow for more persistent treatment, or to allow treatment for the pediatric population;
- Repurposed drugs that already have a known safety profile and could be a treatment option;
- Preclinical research that investigates a drug’s effectiveness post-resection of heterotopic bone;
- Research that further elucidates the mechanisms for FOP muscle and regeneration as well as tendon and ligament repair.
After reviewing multiple applications, four grants studying FOP were awarded a total of $207,310.
Application information for the 2019 ACT for FOP Grant program will be available in April 2019.
Previous ACT (Accelerating Cures and Treatments) for FOP Grant Awardees
Million Dollar Bike Ride Pilot Grant Program
About the Million Dollar Bike Ride Pilot Grant Program
The IFOPA is pleased to partner for the first time with the Orphan Disease Center (ODC) at the University of Pennsylvania to expand FOP research grants through the 2018 Million Dollar Bike Ride (MDBR) Pilot Grant Program. The Million Dollar Bike Ride brings 550+ cyclists and volunteers to Penn’s campus to ride either 13, 34, or 72 miles starting in the city, and ranging across the Greater Philadelphia region. In five years, the MDBR’s 27+ teams have funded over $8 million for rare disease research in partnership with the ODC.
These grants were made possible by Team #cureFOP riders who participated in the Million Dollar Bike Ride, including Kristi & Rico Gonzales; Lynn Butterworth & John Rendinaro; Joe Martucci, Megan Martucci & Richard Martucci; Liz Wolensky; a Clementia team including Chris Ludwig, Fei Shih and Joe Walewicz; and the IFOPA.
Grant applications were sought in two FOP research areas:
- Research that seeks to identify biomarkers, including novel imaging techniques, capable of measuring and predicting early FOP disease progression and/or treatment response.
- Research that investigates and further elucidates the immunologic mechanism in FOP.
After reviewing multiple applications, two grants studying the immunologic mechanism in FOP were awarded a total of $75,266.
Application information for the 2019 Million Dollar Bike Ride Pilot Grant program will be available in Summer 2019.
Scientific Advisory Board
Applications are reviewed by a Scientific Advisory Board that is free of conflict of interest and has relevant and appropriate expertise related to FOP to evaluate proposals.
The IFOPA Scientific Advisory Board includes:
Vicki Rosen, PhD, Chair
Department of Developmental Biology
Harvard School of Dental Medicine
Karen Lyons, PhD
Department of Molecular, Cell and Developmental Biology
UCLA/ Orthopaedic Hospital Department of Orthopaedic Surgery
Ernestina Schipani, MD, PhD
Department of Orthopaedic Surgery
University of Michigan
Michael Whyte, MD
Division of Bone & Mineral Diseases
Washington University School of Medicine
Paul Yu, MD, PhD (Reviewer only for the Million Dollar Bike Ride Program)
Department of Cardiovascular Medicine
Brigham and Women's Hospital
Michael Zasloff, MD, PhD
Department of Surgery
Georgetown University Medical Center