March 2019 eNewsletter
This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.
Updated FOP Treatment Guidelines Released

The 2019 edition of The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations (also known as the FOP Treatment Guidelines) is now available. The updated Guidelines include:

  • 15 new sections
  • Completely updated sections that you found useful in the past
  • New Executive Summary of Key Practice Points (Section II)

The IFOPA thanks the International Clinical Council on FOP (ICC) , its 21 members and five consultants who spent the last year diligently working to update the FOP Treatment Guidelines.

You can access the FOP Treatment Guidelines at or on the IFOPA's Pinterest page .

Goal of 20 New Monthly Donors Achieved

 20 new donors stepped forward in February and committed to make a monthly gift in support of the IFOPA's mission-critical work. With 20 new monthly donors, the IFOPA also received a generous $5,000 donation.  

Order Your FOP Awareness Day Apparel

International FOP Awareness Day is April 23. You can raise FOP awareness on that day and every time you wear the IFOPA's new "Could it be FOP?" gear. These shirts and hoodies are informative and great conversation starters. And they’re available in toddler, youth and adult sizes so they’re great for the whole family. We fulfill U.S. and international orders. The deadline to order is March 27 .

2019 Family Gathering Preview and Stipend Applications Now Available

A sneak peak of the 2019 Family Gathering agenda and registration rates is now available. Individuals with FOP (or their caregiver) may also apply for a travel and/or lodging stipend at this time. The deadline to apply is April 15 and applicants will receive notification of their application outcome before registration opens on May 1 .

Fun Feats for FOP

Starting April 1, use your feet to do fun feats and raise awareness for FOP! Post pictures on social media with the hashtag  #FunFeet4FOP  and challenge three friends to do the same and/or make a donation to the IFOPA. You can wear silly socks, mismatched shoes or get a pedicure with silly colors. Inspire others to join in throughout the month. You can even host a fun event for International FOP Awareness Day on April 23. Get creative with your feet and help bring attention to FOP. If you have questions, contact Cathryn Roys , Community Fundraising Manager.

Meet FOP Connect Mentor Patrick Doerr

Each person with FOP has a unique experience, but that doesn’t mean anyone has to go through it alone. Patrick Doerr, who was diagnosed with FOP at six months old, knows the importance of a good support system and is now hoping to help others as a mentor.

FOP Mouse Model Now Available to Researchers

The IFOPA is pleased to announce that it is now taking requests from researchers worldwide for its FOP mouse model. Thanks to generous sponsorship from La Jolla Pharmaceutical Company, the IFOPA now owns a conditiona l ALK2 R206H FOP mouse model that can be distributed to academic and corporate labs for unrestricted research use. The new mouse design was created in collaboration with Drs. Dan Perrien (Vanderbilt University), Aris Economides (Regeneron), Yuji Mishina (University of Michigan), Maurizio Pacifici (Children's Hospital of Philadelphia) and Eileen Shore (University of Pennsylvania). 

Celebrate Doctor's Appreciation Day on March 30

 Our doctors are important! The IFOPA can help you show your doctors how much they’re appreciated on National Doctor's Day. Orders must be placed by March 22 .