May 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.
2020 FOP Awareness Day Hits Major Milestones

We’re thrilled to let you know that thanks to our amazing FOP community supporters, we broke major milestones with the 2020 Awareness Day campaign! 

2020 FOP Family Gathering Goes Virtual

2020 has been a year of change, adjustment and uncertainty. We want you to know that the IFOPA will always be here to provide you with the support, education and community you need.

The safety and well-being of our families is our number one priority and hosting an in-person Family Gathering does not align with that priority this year.  The IFOPA's Board of Directors and staff have decided not to hold the in-person Family Gathering that was originally planned for November 2020 in Dallas, Texas .

We are excited to begin the planning process to host a virtual Family Gathering . Holding a virtual event means that we can include FOP families from around the world and people that haven't been able to attend before can participate from the convenience of their homes.

To help us plan an event that best meets your needs, we are seeking your input . Please note: The survey can be translated into other languages for our non-English speaking community members.

You Can Fund FOP Research Through the
2020 Virtual Million Dollar Bike Ride

Due to mandates for social distancing, many events have been canceled or postponed. Fortunately, riding a bike or going for a walk is allowed and is a great way for your family to get outside during these days of isolation.

For the 3rd year, the IFOPA has been invited to participate in the    2020 Penn Medicine Orphan Disease Center Million Dollar Bike Ride  – a fully virtual event   – being held on Saturday,  June 13 No matter where or how you ride, your participation raises critical funds to support new FOP research grants .

View the Famous FOP Skeletons Through The Mütter Museum Virtual Tour

Many of you have heard about the famous FOP skeletons that Harry Eastlack and Carol Orzel generously gave as a gift to the FOP community and FOP research when they each passed away. Harry passed in 1973 at the age of 39; Carol in 2018 at the age of 59.

The Mütter Museum in Philadelphia, which houses this very special display on FOP, is offering a virtual tour of the Museum. What an incredible opportunity for those of you who have not had an opportunity to see Harry and Carol to get a "tour." You can see the FOP display at the 18:46 mark; it lasts until 21:25.

Register Now for Next Month's Mental Health Webinar

Did you know that approximately 1 in 4 children and 1 in 5 adults suffer from a type of anxiety disorder and nearly half of those diagnosed with depression also suffer from an anxiety disorder?

Join Brittany Talley, licensed professional counselor and play therapist with experience serving clients from childhood into adulthood, as she discusses the nature of mental health disorders, the signs of an anxiety or depressive disorder, opportunities and options for treatment and how a mental health disease can be compounded by life with a rare disease.

Practice Self-Care and Refuel Your Tank with the Resilient Living Program

Self-care includes all the healthy behaviors that help you balance the effects of emotional and physical stress. It is one of our greatest tools to refill our tank and be able to adapt to and overcome the stressors we experience in life. Knowing best practices for how to make self-care a priority and a routine is the first step!

Spring Sibling Spotlight

We're excited to put the spotlight on our wonderful siblings this Spring by celebrating National Siblings Day last month here in North America and Brothers and Sisters Day on May 31 for our international community. If you would like your sibling(s) to receive a virtual Brothers and Sisters Day card, please email our Family Services Manager at .

We appreciate all that our amazing siblings do to be a part of the support network for their brother or sister with FOP and their entire family unit.

The Hollywood Family Gives Back During the Pandemic

Suzanne Hollywood, and her son, Joey, who has FOP, are making a difference in their New Jersey community. They’re helping get face masks, caps and ear guards to people who need them during the COVID-19 pandemic.

Have You Seen The New FOP Registry Web Page?

The FOP Registry is the largest and most detailed collection of information about FOP and the individuals living with this condition. When you participate in the Registry, you advance research!

Not sure if you're enrolled? Send an email to . If you're enrolled, be sure to watch for and complete your 6-month follow-up surveys. The Registry can only continue to grow when you enroll and keep participating!