In Pursuit of a Cure
The IFOPA has been funding FOP research since 1990. In 2020, we celebrate 30 years of funding research at the University of Pennsylvania! It’s the dedication and generosity of our amazing FOP community that allows us to expand the research we fund in search of treatments and a cure.
In 2020, the IFOPA launched the In Pursuit of a Cure Campaign to fund new ACT for FOP drug development grants and the IFOPA’s first-ever targeted research grant in gene therapy.
Gene therapy doesn’t replace drug development or current and future clinical trials. But if successful, gene therapy has the potential to cure FOP. We can search for treatments and a cure together!
GET THE FACTS.
Learn more about gene therapy
Watch the 2020 virtual event — In Pursuit of a Cure — An Evening of Inspiration & Possibility
GET THE FACTS.
Learn more about what gene therapy is and its potential in the search for a cure for FOP.
Gene therapy is an approach to treating diseases that seeks to modify or introduce genes into a patient's body. Genes are the “blueprint” for how your body functions. People with FOP have a difference in their genes that causes excess bone to grow. Gene therapy may be a way to correct that difference.
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 Past President of the American Society of Gene & Cell Therapy and Director of the Horae Gene Therapy Center at the University of Massachusetts Medical School. A consortium of gene therapy experts and FOP specialists will collaborate to help guide this FOP gene therapy research.
A consortium of gene therapy experts and FOP specialists will collaborate to help guide this FOP gene therapy research.
Consortium members include Drs. Guangping Gao, Jae-Hyuck Shim (Lead Investigator), Jun Xie, Yeon-Suk Yang, Jungming Kim and Oksun Lee of the University of Massachusetts; Drs. Fred Kaplan and Eileen Shore of the University of Pennsylvania; Dr. Jeffrey Chamberlain of the University of Washington; Dr. David Goldhamer of the University of Connecticut; Dr. Benjamin Levi of the University of Texas Southwestern Medical Center; and Dr. Paul Yu of Harvard Medical School and Brigham and Women’s Hospital.
Watch this video from the American Society of Gene & Cell Therapy to learn the basics of gene therapy.
Watch a recording of the IFOPA’s webinar on gene therapy with IFOPA’s Research Committee Chair Betsy Bogard and former Research Director Adam Sherman to learn more about how gene therapy might be used for FOP.
The In Pursuit of a Cure Campaign will culminate in a live international event that unites the entire FOP community on the path to treatments and a cure.
A virtual event, In Pursuit of a Cure – An Evening of Inspiration & Possibility, was held in August 2020 on Facebook and YouTube. The event was broadcast five times to include families from the US and Canada, Latin America, Europe and Russia, Australia and New Zealand, Asia, the Middle East and Africa.
The event was both educational and touching. Viewers heard about the success of the ACT for FOP Drug Development Grant Program which started in 2015, learned what gene therapy is and how it may benefit the FOP community. Viewers also met FOP families, including some very special Youth Ambassadors.
A generous donor offered a special $50,000 gift to match the first $50,000 in donations to In Pursuit of a Cure. The event not only raised much-needed funds for FOP research, nearly $490,000 in total, but it spread the word about FOP. The two-day virtual event had a reach of more than 16,000 and received more than 3,000 reactions on Facebook & YouTube.
Missed the In Pursuit of a Cure event or want to watch it again?
Hear thank you messages from In Pursuit of a Cure Youth Ambassadors
AUGUST 26 / 27, 2020
On August 26 & 27, the IFOPA hosted In Pursuit of a Cure - An Evening of Inspiration & Possibility; a virtual event raising funds for new ACT for FOP drug development grants and the IFOPA’s first-ever research grant in gene therapy. Attendees from around the world joined us at five different viewing times to meet FOP and gene therapy researchers and hear from FOP families and Youth Ambassadors.