Note: It's been awhile since my last blog post (this is Shannon). I should be writing more, but right now I am focusing on living in the moment, trying to not worry so much about the future with FOP (see below for why this is possible), working hard to only be online when I have to (for work and Raina fun), and hoping we are teaching Raina to do the same. Please go here to donate to the IFOPA so this worrying about the future - at least as far as FOP is concerned - can soon be a thing of the past for all FOP warriors and their loved ones. Generous donors are matching all donations dollar-for-dollar up to $30K from now until the end of April.

Thank you all so much for being a part of Raina's army. She is a warrior, for sure.  Please read on.

Thank you all so much for being a part of Raina's army. She is a warrior, for sure. Please read on.


Today, April 23, is International FOP Awareness Day.

On this day, the FOP community celebrates the anniversary of the announcement of the FOP gene discovery, ACVR1, by researchers at the University of Pennsylvania School of Medicine. See photos from the press conference and learn more about the gene discovery.

Today, as we celebrate the gene discovery, we also celebrate all that is happening in FOP research today:

  • Three active FOP clinical trials – one underway in Japan and two worldwide trials, Regeneron’s LUMINA-1 and Clementia’s MOVE trial, that are now recruiting their first patients.
  • 13 FOP drug treatments being studied by 15 different pharmaceutical companies and academic institutions as potential treatments for FOP with the latest, BioCryst pharmaceuticals, just announcing their FOP work in January 2018.
  • The IFOPA’s FOP Patient Registry with more than one-third of the known FOP patients in the world already registered.
  • Ongoing research on FOP at the University of Pennsylvania and many other academic institutions around the world that continues at full speed.
  • Four new FOP Competitive Research Grants recently awarded by the IFOPA with the highest level of funding ever to help accelerate development of safe and transformative therapies for FOP.

These advancements would not be possible without you - friends, families and warriors in our loyal FOP community.

Will you join us today as we continue to fight to #cureFOP? Here are a few ways to participate in FOP Awareness Day:

  • Make a gift to the IFOPA in April and it will be matched dollar for dollar (up to $30,000). Watch your gift fund twice the research, twice the family services, twice the awareness, twice the hope! The match is available through Monday, April 30.
  • Spread the word about FOP by posting the IFOPA's new FOP awareness video (watch below). Special thanks to Matt Horick, the Casebolts, the Scobles and, of course, Drs. Kaplan and Shore for being a part of this important video! 
  • Share FOP Facts to spread awareness on social media. IFOPA will be posting all day and you can simply share or retweet. Connect with them on Facebook, Twitter and LinkedIn.
  • Take a picture in your FOP gear and post it on Facebook, Twitter and Instagram. Don’t forget to tag the @IFOPA and use hashtag #cureFOP.  

Thank you for joining this special anniversary celebration! Please help us meet that $30K goal!