Meet the IFOPA's New and Returning Board Members, Learn About Participating in a COVID-19 Study and More
January 2021 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.
In December, the IFOPA held its annual vote for Board members. Each person that serves on the IFOPA's Board is nominated by the Board Development & Nominating Committee and then voted on by the IFOPA's members. According to the IFOPA's Bylaws, Board members may serve two three-year terms.
Do You Have FOP and You've Had an Experience with COVID?
The Hsiao Lab at University of California San Francisco’s Department of Endocrinology is seeking people with FOP who have experienced any of the following:
Had an exposure to a patient with COVID19 diagnosis or symptoms
Undergone a COVID-19 test (regardless of result)
Or tested positive for COVID-19
Participants can live anywhere in the world. You do NOT have to speak English in order to participate. The name of the study isEffects of COVID-19 on Endocrine Disorders.
Multiple Kinase Inhibitors Being Tested to Treat FOP
On December 21, BioCryst announced they completed their Phase 1 first-in-humans study of BCX9250 – a kinase inhibitor developed for the treatment of FOP.
You may be aware that there are several kinase inhibitors being investigated for the treatment of FOP.
Becoming a Better Advocate for Yourself or Your Loved One
In 2021, the IFOPA will be offering a new program to help FOP families create change to ensure their needs are met. IFOPA staff, FOP community members and subject-matter experts will all contribute to the knowledge sharing and resource building that takes place throughout the series. All live program resources will be available with translation and content is geared towards international applicability!
The Advocacy Series will offer monthly opportunities for community members to:
Learn specifics skills to increase their confidence in communicating their needs
Hear from and connect with other members of the FOP community on the topic of advocacy
Be an active participant in practicing new skills through worksheets, Zoom meetings and webinars
Did you know the baby teeth of children and pre-teens with FOP can help FOP research? There is a short window of opportunity for receiving the teeth, so we've developed specific instructions for their handling and shipping. All postage is paid so it costs you nothing to help FOP research.
Please note: The teeth must be processed immediately to harvest the cells that help FOP research, so we are only able to accept baby teeth from the United States.
Take a Closer Look at the New Ability Toolbox Online Guidebook!
The new Ability Toolbox Online Guidebook went live in December 2020 with 12 different tool categories containing tools, tips and home modifications that can be used to make living with FOP more manageable.
Get a tour of the Guidebook and learn how you can share your knowledge and experience with others to make the Guidebook more valuable and the FOP community stronger and more successful!
Families From Around the World Invited to Join the Fun in 2021
In the feedback survey for the 2020 Virtual FOP Family Gathering, attendees shared that our community social events were a big hit!
We've listened to your requests and are excited to share a new series of IFOPA Family Services programming aimed at creating more fun and connection.
Translation will be available for all events and we've made every attempt to schedule meetings for times that are convenient for international participants!
Each month in 2021 we'll be hosting a community social event. Visit
The Ng family recently held its 2nd annual holiday fundraiser. Once again, their daughter, Haley, created beautiful Christmas-themed crafts for friends and family to enjoy. Their efforts and creativity raised nearly $1,500!
