The International FOP Association (IFOPA) was founded in 1988 by Jeannie Peeper to connect people living with FOP, but dedicated volunteers quickly began raising money for research. One of the most important findings of the research work you have helped fund was discovery of ACVR1, the FOP gene, which was announced on April 23, 2006. Learn more about the researcher who discovered this gene and discovery of the FOP gene.
2017 Awareness Day
Sunday, April 23 is International FOP Awareness Day. On this day, the FOP community celebrates the eleventh anniversary of the 2006 announcement of the discovery of the FOP gene, ACVR1.
Since this milestone discovery eleven years ago, the IFOPA has been proud to be a part of many more accomplishments on the road to #cureFOP:
• April 23, 2006 – Announcement that ACVR1, the FOP gene, had been discovered
• 2006 – The IFOPA Quality of L.I.F.E. Awards established. More than $50,500 has been granted to individuals living with FOP to purchase specific items which allow them to Live Independently with Full Equality (L.I.F.E.)
• 2007 – The IFOPA formed the International President’s Council (IPC) to better support individuals living with FOP in specific regions around the world. Today, there are 23 IPCs in 19 countries working together with the IFOPA.
• 2010 – The IFOPA first offered medical binders to help individuals living with FOP keep track of their health. Today, binders are available in nine languages.
• 2013 – The IFOPA held its 25th Anniversary Celebration and FOP Family Gathering in Orlando, Fla.
• 2014 – IFOPA hosted the first FOP Drug Development Forum for clinicians, researchers and the pharmaceutical industry
• 2015 - The IFOPA launches its first Competitive Research Grant program and awards three grants totaling $125,000, as well as the global FOP Connection Patient Registry for individuals living with FOP
• 2016 – The IFOPA hosted the 2nd FOP Drug Development Forum with 169 attendees from 38 academic institutions and 13 pharmaceutical companies. The Midwest Family Gathering brought together nearly 20 families to learn from medical and research experts, share stories, catch up and build new friendships.
Since our founding in 1988, and thanks to the generosity of fundraisers and donors, the IFOPA has funded over $10 million dollars in FOP research to find treatments and a cure!
Participation in Awareness Day is fun and easy! Help us spread the word in these fun and easy ways:
- An anonymous donor has challenged the FOP Community to raise $11,000 for Awareness Day. If we do so, this donor will give a match of $11,000. Make your donation or start a fundraising page at https://donate.ifopa.org/awarenessday2017 to help us reach this goal.
- Change your profile picture to the #cureFOP Awareness Day Badge. (include badge for people to download - coming soon!)
- Follow along on the IFOPA's Facebook page the week of April 19 for a series of Awareness Day challenges.
- Host a Fun Fee for FOP Day (similar to an office "jeans day") at your institution or company where employees can wear their favorite shoes to the office - even boots, casual shoes or house slippers. Your efforts help draw attention to an important early indication of FOP - the malformation of the big toe. Here's how it works...
- For a small donation (suggested amount is $5) your co-workers can wear their favorite or wackiest footwear to the office one day during the week of April 19 - you pick the date!
- Donations may be made online at https://donate.ifopa.org/awarenessday2017
- Post photos of your fun feet on social media. Be sure to use #FunFeet4FOP, #cureFOP and tag @ifopa in your posts. The more photos posted, the more awareness raised.
2016 Celebration: 10th Anniversary
In 2016, as we celebrated the 10th anniversary of the gene discovery announcement, we had a generous donor who offered a match up to $10,000 for every dollar raised in honor of the 10th anniversary. Our incredible FOP community raised $25,000 in response, making a total of $35,000 raised.