Spread the word.
None of the incredible progress we’ve made in FOP research — identification of the FOP gene and the development of potential treatments — would be possible without the dedication of our community. And while we’ve come so far, we still have far to go.
We can search for treatments and a cure together. The IFOPA invites you to join the In Pursuit of a Cure Campaign to expand FOP research — and we hope you will invite your friends and family to join as well!
Our FOP families and communities are the best fundraisers! As we work toward our $250,000 goal, please help kick off the In Pursuit of a Cure Campaign.
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 26 / 27 event — In Pursuit of a Cure - An Evening of Inspiration and Possibility with the IFOPA. Email Cathryn Roys, Community Fundraising Manager, to get your postcards and/or electronic flyer.
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.
Watch this video from the American Society of Gene & Cell Therapy to learn the basics of gene therapy.
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.
Join the IFOPA and the international FOP community for an exciting evening in support of expanding FOP research, including the first-ever gene therapy grant. It’s a virtual event, so you and your family and friends can take part from the comfort of your homes!
The event will be live broadcast on Facebook and YouTube.
Select the viewing time that works best for you:
August 26 at 7 pm ET/11 pm GMT* (US, Canada, Central America & South America)
August 26 at 9 pm ET or August 27 at 1 am GMT* (US, Canada, Central America & South America)
August 27 at 5 am ET/9 am GMT* (Australia & New Zealand)
August 27 at 7 am ET/11 am GMT* (Hong Kong & Asia)
August 27 at 2 pm ET/6 pm GMT* (Europe, Russia, the Middle East and South Africa)
The first $50,000 in donations will be matched!
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.