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
Jeffrey Chamberlain, PhD University of Washington
Guangping Gao, PhD University of Massachusetts
David Goldhamer, PhD University of Connecticut
Frederick Kaplan, MD University of Pennsylvania
Jung-Min Kim, PhD University of Massachusetts
Benjamin Levi, MD University of Texas Southwestern Medical Center
Eileen Shore, PhD University of Pennsylvania
Jun Xie, PhD
University of Massachusetts
University of Massachusetts
Paul Yu, MD, PhD
Harvard Medical School and Brigham and Women’s Hospital
Spread the word.
It’s the dedication and generosity of our amazing FOP community — YOU — that has driven FOP research since 1990. As a member of our FOP family, you know that our shared vision is "A cure for FOP, accessible worldwide."
With the 2021 In Pursuit of a Cure Campaign, we’re excited to continue the exploration of gene therapy for the treatment of FOP and fund NEW ACT for FOP drug development grants.
Gene therapy does not replace traditional drug discovery. Gene therapy represents another weapon in our arsenal against the devastating effects of FOP.
The In Pursuit of a Cure Campaign brings us together in the search for treatments and a cure.
Our FOP families and communities are the best fundraisers! As we work toward our $300,000 goal, please help kick off the In Pursuit of a Cure Campaign.
Want to learn more about how you can help?
Watch this recording on how to set up your personal fundraising page and find out about resources available to help you invite your friends and family to the live event on August 25 or 26.
Set Up a Personal Fundraising Page
- We’ll provide you a page where you can share your FOP story, photos and why you want to see FOP research grow.
- Or we can provide a generic FOP community template for you.
- You’ll set a goal and have a unique URL to send out to your friends and family.
- You’ll get updates on who has donated to your campaign.
Invite Your Friends and Family to Our Virtual Event
We can provide you postcards or an electronic flyer to invite your friends and family to the August 25 or 26 event. Email Cathryn Roys, Fundraising and Special Projects Manager, to get your postcards and/or electronic flyer.
The In Pursuit of a Cure Campaign culminated in a live international event to unite the entire FOP community on the path to treatments and a cure.
AUGUST 25 / 26, 2021
On August 25 & 26, the IFOPA hosted In Pursuit of a Cure 2021, a virtual event raising funds for phase 2 of the gene therapy research at the University of Massachusetts and new ACT for FOP drug development grants. Attendees from around the world joined us at five different viewing times to meet FOP scientists and hear from FOP families and Youth Ambassadors.
Watch the live broadcast of In Pursuit of a Cure 2021
See a special THANK YOU message from our Youth Ambassadors
Prefer to donate by mail? Mail a check to: IFOPA, PO Box 800084, Kansas City, MO 64180 USA
Prefer to donate stock? Learn more.
In Pursuit of a Cure
The IFOPA has been funding FOP research since 1990. It’s the dedication and generosity of our amazing FOP community — YOU — that allows us to expand the research we fund in search of treatments and a cure.
With the 2021 In Pursuit of a Cure Campaign — Investing in Progress. Believing in Hope. — we’re excited to continue the exploration of gene therapy for the treatment of FOP and fund NEW ACT for FOP drug development grants. Gene therapy does not replace traditional drug discovery. Gene therapy represents another weapon in our arsenal against the devastating effects of FOP.
How can you get involved? We need every member of the FOP community to: Get the Facts and learn about gene therapy. Spread the Word and invite your friends to the live video event. Take Action and register for the live event and make a generous gift to support this mission-critical campaign.
GET THE FACTS.
Learn more about gene therapy by watching videos on our website and attending a webinar on August 12.
SPREAD THE WORD.
Tell others about the IFOPA’s success in cutting-edge research programs, set up a personal fundraising page and invite your friends and family to get involved.
Attend our virtual event on August 25 or 26 to show your support for Investing in Progress. Believing in Hope. You can select the viewing time that works best for you.
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.
In 2020, your support allowed the IFOPA to fund the first-ever gene therapy research grant in FOP. The grant was awarded to experienced gene therapy researchers at the University of Massachusetts. In one short year, researchers at the University of Massachusetts:
- Identified the AAV vector that can target the right cells and tissues in FOP.
- Introduced 3 therapeutic genes into this AAV vector testing gene addition, silencing and replacement. Among them, the AAV vector for gene replacement showed good therapeutic effects in human FOP cells.
- Then they began to test whether this vector can reduce extra bone formation in adult FOP mice when systemically or locally delivered.
- A consortium of gene therapy experts and FOP specialists are collaborating to help guide this FOP gene therapy research. Meet the team.
Watch the webinar featuring the IFOPA’s new 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.
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.