IFOPA Announces In Pursuit of a Cure Campaign

CONTACT: Michelle Davis, IFOPA Executive Director
[email protected]
July 24, 2020


The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) Announces
Expansion of Research Efforts with In Pursuit of a Cure Campaign

The In Pursuit of a Cure Campaign will fund new research grants in drug development and the organization’s first-ever targeted grant for gene therapy research.

The IFOPA has funded fibrodysplasia ossificans progressiva (FOP) research since 1990. FOP is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues. Persons with FOP develop bridges of bone across joints that progressively restrict movement and imprison them in a second skeleton.

Currently, there are no treatments for FOP. The IFOPA’s mission is to fund research to find a cure for FOP, while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide. 
The In Pursuit of a Cure Campaign, scheduled to launch in late July 2020, will grow FOP research to fund new Accelerating Cures and Treatments (ACT) for FOP competitive research grants and the IFOPA’s first-ever targeted research grant in gene therapy. The campaign will also include educational opportunities for the community to learn more about gene therapy.
The IFOPA’s first-ever gene therapy research grant has been awarded to Jae-Hyuck Shim, PhD, Associate Professor, Department of Medicine/Division of Rheumatology Immunology and Microbiology Program at the University of Massachusetts Medical School and to Guangping Gao, PhD, Professor of Microbiology and Physiological Systems at the University of Massachusetts Medical School. Dr. Gao is also the former President of the American Society of Gene & Cell Therapy and Director of the Horae Gene Therapy Center at the University of Massachusetts Medical School.
“Currently there are more than 7,000 rare genetic diseases most of which have no effective treatment available, FOP is one of them,” said Dr. Gao. Gene therapy offers the most direct therapeutic potential to rare diseases like FOP. My colleagues at UMass and I are very excited for the opportunity to closely collaborate with the IFOPA and explore gene therapy for FOP.”    
“We are committed to exploring every avenue of research toward a cure for FOP,” said IFOPA Research Development and Partnerships Director, Adam Sherman. “Our priority today is to support ongoing research as well as current and future clinical trials in FOP.  However, gene therapy is a long road, and we must leave no stone unturned in the search for a cure,” he said.
A consortium of gene therapy experts and FOP specialists will collaborate to help guide this FOP gene therapy research.
Members of the FOP Gene Therapy Consortium include: Drs. Guangping Gao and Jay-Hyuck Shim, University of Massachusetts; Drs. Frederick Kaplan and Eileen Shore, University of Pennsylvania; Dr. Jeffrey Chamberlain, University of Washington; Dr. David Goldhamer, University of Connecticut; Dr. Benjamin Levi, University of Texas Southwestern and Dr. Paul Yu, Brigham and Women’s Hospital and Harvard Medical School.
“We’ve come so far — with the identification of the FOP gene in 2006 and the development of potential treatments — but we still have far to go,” said IFOPA Executive Director, Michelle Davis. “If research fails, that will still lead us to new paths.”
More information on the In Pursuit of a Cure Campaign will be available at ifopa.org on July 29.

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