April 23, 2017

On Sunday, April 23 the FOP community celebrated International FOP Awareness Day which commemorated the eleventh anniversary of the 2006 announcement of the discovery of the FOP gene, ACVR1.

Thank you to the FOP Community for a successful Awareness Day! Together you...  Raised more than $25,000 Reached 32,427 people on Facebook Shared the FOP Facts posts 316 times Match Update: Two anonymous donors challenged the FOP Community to raise a combined $21,000 for Awareness Day - $11,000 for the eleventh anniversary of the announcement of the gene discovery, and $10,000 in honor of FOP'er, Natalie McGuire. Thanks to the FOP community, the match was met! You may still make a donation in honor of Awareness Day through April 30, 2017 at https://donate.ifopa.org/awarenessday2017.

 

Since this milestone discovery, 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!