March 2020 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.
Coronavirus (COVID-19) Update for FOP Families

On March 16 the International Clinical Council on FOP issued Coronavirus (COVID-19) Precautions for FOP families.

STOPFOP Trial Enrollment Paused

On March 3 we announced that the STOPFOP trial had opened enrollment in Europe . Today, as a result of the Coronavirus (COVID-19) outbreak, recruitment has been paused.

Date Change for Bingo for a Cure!

Due to circumstances beyond the control of Joshua's Future of Promises, Bingo for a Cure! has been rescheduled for Sunday, May 3, 2020 at the Allentown Fairgrounds, Ag Hall at 1 pm.

Questions can be sent to auntchrissy@joshuasfop.com . Thank you for your continued support and understanding.
Help Us Connect and Serve Siblings

When an individual is diagnosed with FOP, the whole family experiences the impact of the diagnosis. As our Family Services programs grow, we will be recognizing the sibling relationship and providing resources geared towards supporting our siblings of all ages .

FOP Awareness Day

April 23 is FOP Awareness Day , the day we celebrate the announcement that the FOP gene, ACVR1, had been discovered. That announcement was made 14 years ago in 2006.

FOP Awareness Day 2020 is just around the corner and we have 5 ways you can help raise awareness in your community.

ACT for FOP Research Grant Call for Proposals Now Open

The IFOPA is  pleased to announce our sixth request for ACT for FOP (Accelerating Cures & Treatments) Grant applications . The ACT for FOP Grant Program helps support investigators interested in researching and accelerating the development of safe and transformative therapies for FOP.

The ACT for FOP Grant Program provides, through a competitive application process, funding to scientists conducting research on FOP; applicants from any country are welcome. As a result of this program, the IFOPA, with support from other national organizations and local fundraisers, has awarded nearly $1 million in research grants since 2015.  The deadline for submissions is June 3, 2020 .

March is the Month to Focus on Your Emotions

There's only a few days left to register for the IFOPA's March 24 webinar on emotional expressiveness . With all of the emotions and lifestyle changes brought on by the Coronavirus, we could all use help learning how to effectively process our emotions.

Join us for an interactive, online one-hour training session on March 24 at 8 pm ET . We'll explore some effective ways to become aware of and process emotions, as well as some counterproductive actions to be on the lookout for.

Classic Car Drives Fundraising Support for the FOP Community

“The Avanti is a unique and special vehicle, so it dovetails perfectly with FOPers who are also unique and special,” said Mike Man of donating his 1976 Studebaker Avanti II to raise money for the IFOPA.

The Latest FOP Registry Publication

We're pleased to share the most recent publication from the FOP Registry. Publications from the Registry are made possible by the ongoing contributions of FOP patients and their caregivers when they complete Enrollment and Follow-up Surveys. By publishing articles, we expand FOP knowledge and are able to share with the community what we're learning from the Registry data . This is one of the many ways your contribution helps FOP research!