Take Action
We Hope You Were Part of the 2022 Live International Event
For the third year in a row, our FOP community came together for In Pursuit of a Cure — an annual global event that supports the IFOPA’s first-ever gene therapy research program and helps support the advancement of clinical trial research.
We are Investing in Every Path to Hope.
Four viewing times over two days were available for the global FOP community:
September 29
7 pm ET (United States, Canada and Latin America)
9 pm ET (United States, Canada and Latin America)
September 30
8 pm AEST/ 6 pm HKT / 6 pm CST / 6 am ET (Australia, New Zealand and Asia)
8 pm CEST / 7 pm BST / 2 pm ET (United Kingdom, Europe, the Middle East and Africa)
Watch now!
We're grateful to everyone who supported this critical campaign with a donation or by helping fundraise to ensure this important research continues. Meet the 2022 In Pursuit of A Cure donors and fundraisers.
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Get The Facts
Gene Therapy and Drug Development
People with FOP have a difference in their genes that causes excess bone to grow. Gene therapy presents an exciting approach to treating FOP. While it holds great potential, gene therapy technology is currently limited.
We can silence, add, replace and, in some cases, edit genes. But we can’t do this for every cell in the body, all the time, for the life of the individual.
This is why traditional drug trials, like STOPFOP, are still needed.
Caring for People with FOP Today, Tomorrow and Into the Future
Your early funding gave us tools to explore which types of gene therapy — silencing (RNA), addition (DNA), or a combination of the two — have the highest potential to safely and effectively treat FOP.
There are other easy ways for you to learn more about gene therapy:
You’ll hear a lot about RNA interference and how it might lead to a treatment for FOP. Watch the video by TedEd — RNAi: Slicing, Dicing and Serving Your Cells by Alex Dainis to learn more about RNAi.
Watch the webinar featuring the IFOPA’s Research Director Danielle Kerkovich, PhD to learn more about gene therapy and how it might be used for FOP.
The American Society of Gene & Cell Therapy has created some wonderful tools to educate patients and families. Watch one or all of these videos from their Gene & Cell Therapy 101 educational series. The 2nd video, Viral Vectors Overview, will talk about AAV Vectors which are being studied at UMass to better understand their use in FOP.
Spread the Word
Advancing FOP Research Together
Our FOP families are the best fundraisers and ambassadors! This year, we hope you’ll help us get the word out about the 2022 In Pursuit of a Cure Campaign and reach our ambitious goal of raising $525,000 to support:
Lots of Ways to Get Involved
Your energy and support keep FOP research moving forward. As a member of our FOP family, you know we won’t stop until we reach our shared vision of “A cure for FOP, accessible worldwide.”
Here are a few ideas for spreading the word:
Meet the Team
MEET THE TEAM
The IFOPA has organized a group of gene therapy experts along with FOP clinician scientists to leverage their collective expertise and provide guidance on genetic approaches to the treatment of FOP.
Jae-Hyuck Shim, PhD (Lead Investigator) University of Massachusetts
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Jeffrey Chamberlain, PhD University of Washington
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Guangping Gao, PhD University of Massachusetts
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David Goldhamer, PhD University of Connecticut
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Frederick Kaplan, MD University of Pennsylvania
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Jung-Min Kim, PhD University of Massachusetts
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Benjamin Levi, MD University of Texas Southwestern Medical Center
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Eileen Shore, PhD University of Pennsylvania
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Jun Xie, PhD
University of Massachusetts |
Yeon-Suk Yang,
University of Massachusetts |
Paul Yu, MD, PhD
Harvard Medical School and Brigham and Women’s Hospital |
