June 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.
IFOPA Turns 32 Years Old

Thirty-two years ago, the IFOPA's Founder Jeannie Peeper and the 10 Founding Members made a life-changing difference for the FOP community.

9 New Proposals Submitted to ACT for FOP Research Grant Program

Since it was launched in 2015, the ACT for FOP ( A ccelerating  C ures and  T reatments) Grant Program has funded 18 research grants at 14 different institutions around the world. These grants fund research focused on accelerating the development of new drugs for FOP. 

The 2020 application cycle just ended with proposals submitted for 9 new FOP research projects and this summer the ACT for FOP Scientific Advisory Board, chaired by Dr. Vicki Rosen, will review each application and select the grants to be funded.

Did You Miss the Webinar on Mental Health? Recording Now Available

Last week, Brittany Talley, licensed professional counselor and play therapist, presented a webinar focusing on two of the major mental health disorders people commonly experience:

  1. Anxiety
  2. Depression

The webinar concluded with options for treatment and an FOP community discussion of how mental health disorders can be compounded by life with FOP . 

Additional questions from attendees prompted discussions about choosing the right therapist, resources when insurance does not pay for therapy and what you can do to support a loved one you think may be struggling with anxiety or depression. 

First FOP Registry Medical Portal Sites Approved

You know the FOP Registry and how patients add their data to benefit FOP research. But did you know the IFOPA has been building a Medical Portal where physicians will add complementary data?

We are excited to announce that our first Medical Portal sites have received Ethics Committee approval to participate in the FOP Registry .

Dates Announced! 2020 Virtual FOP Family Gathering

The official dates of the 2020 FOP Family Gathering are  Friday, November 20 to Sunday, November 22 .We are already counting down the days until we're able to see our community members from all over the world in a virtual event environment .

With just under six months to go, we are happy to be able to share an itinerary and sneak peek of the virtual environment today! As a virtual event, this year's Gathering is open to anyone that would like to hear more about the latest in FOP research and clinical trials, as well as FOP care, management and support . We hope family, friends, IFOPA supporters, local physicians and FOP researchers will all log on.

2020 Virtual Million Dollar Bike Ride a Big Success

The first-ever virtual Million Dollar Bike Ride inspired 14 cyclists from Australia, Canada and 9 US states to join Team #cureFOP and raise funds for new FOP research grants.

As of June 15, they've helped raise over $27,000 which will be matched dollar for dollar by the University of Pennsylvania Orphan Disease Center . Special thanks to the Team Ipsen cyclists and to Ipsen for making a special gift.

There are $3,000 in matching funds still available and donations can be made through June 30 . If you'd like to make a gift to Team  #cureFOP and have it matched, visit  givingpages.upenn.edu/TeamcureFOP .

Changes, Challenges and Growth: Resilient Living Looks at Hardiness on June 16

Hardiness is giving your best effort, even when it's tough. It includes focusing on what you can control about your situation and viewing difficult situations as learning opportunities.  

  • Are you able to see what is within your control and what is not?
  • Do you take your problems head-on or do you try to hand them off to others? 
Nathaniel Padilla Produces Mask Mounts to Keep People Safe

Nathaniel is finding it’s easy to help others during the pandemic. He connected with Open Works Baltimore , one of America’s largest nonprofit makerspaces, through Instagram. Now, using his 3-D printer, he’s produced 85 mask mounts used with protective face masks and counting.

Calling All Rare Artists

The 2020 EveryLife Foundation Rare Artist Contest opens for submissions today! 

The goal of the Rare Artist Contest is to celebrate the talents of the rare disease community and spread awareness with each piece.

To our knowledge, there has never been an entry from the FOP community so we hope you will help us change that . Anyone who is connected to FOP is encouraged to enter; entries are accepted from anyone ages 4+.

FOP Bereaved Families to Host a Virtual Meetup Over Zoom on June 23

FOP Bereaved Families is a private group, managed by FOP community members Marilyn Hair and Nancy Sando, for family members and close friends of loved ones with FOP who have passed away.

This group is an opportunity for those who have lost a family member to FOP to support each other in loss and grief. While there has long been a Facebook group , Marilyn and Nancy are pleased to host this online meetup to allow the opportunity to connect with one another and have live conversations.

Date and Time: June 23, 7 pm ET/6 pm CT/5 pm MT/4 pm PT
Registration: Every participant will need to register in order to receive the link to join the Zoom meeting. Registration is required as a security feature for the meeting.


If you know someone in the FOP community who has lost a loved one to FOP, we encourage you to share this invitation with them.
Cast Your Vote for the Summer Friendship Over Pages Book Club Read

Summer weather is here and there's no better way to enjoy it than by sitting outside with a good book!  Join the Friendship Over Pages (FOP) Book Club for our summer read and virtual meeting . Last month we welcomed several new members and had not one, but two, great book club meetings.