March 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.
Nearly $325,000 in FOP Research Grants Awarded

Your generosity has made 6 NEW FOP RESEARCH GRANTS a reality – 4 ACT for FOP research grants and 2 Million Dollar Bike Ride Pilot Grant Program grants.

There is a wide variety of research being pursued, including the first-ever FOP research grant in Israel for a small pilot study, a collaborative gene-editing grant, and research on the impact of gut bacteria on flare progression and HO formation.

Practice Growth, Gratitude and Staying Grounded with Journaling Workshops

Are you a/an:
  • Parent, spouse or caregiver who spends the majority of their time taking care of others
  • Individual with time but no energy to jump-start a new routine
  • Teen or tween who needs the incentive of fun and friendship to get involved

The IFOPA's Resilient Living Program is excited to offer 2 NEW JOURNALING WORKSHOPS to support the FOP community in prioritizing self-care and learning new ways to cope with life's stressors by practicing gratitude and a growth mindset:

  1. Self-Care For Caregivers and Adults with FOP: How Writing & Gratitude Can Keep You Grounded
  2. Practicing a Growth Mindset for Teens and Tweens: Journaling and Learning with Big Life Journal (the deadline for teens and tweens to sign up is May 1)

NEW Awareness and Education Programs Launched for Health Care Providers

We recently celebrated Rare Disease Day which reminds us that there are more than 6,000 rare diseases worldwide. Health care providers simply cannot be familiar with every rare disease, but Ipsen and Regeneron recently sponsored NEW medical education programs to increase awareness of FOP and educate health care providers about FOP diagnosis and care.
 
In February, 3 NEW awareness and education programs launched. While Medscape, Peer Voice and Springer Healthcare are promoting these programs through their networks of health care providers and on social media, you are encouraged to share these programs with your local health care providers as well.

You can click the links and check out the programs for yourself.

Connections for Progress and Hope

Daniel Perrien, PhD, is grateful for the research funding he’s received from the IFOPA. But he has an even deeper appreciation for the friendships he’s found with those who have FOP and their families. “Since the IFOPA is responsible for those connections, I want to do what I can to support all of their programs,” Dan says.
 
You can join Dan as a Partner in Possibilities supporting the IFOPA’s mission each month. 89 families have already joined our Focus On Possibilities Monthly Giving Program with only 11 more needed to reach our goal of 100 inaugural donors.
 
Get Your FOP Awareness Day Shirts

April, and FOP Awareness Day, will be here before we know it so now is the time to get your Uniting to Cure FOP shirts. This year we're offering short and long-sleeve t-shirts, tanks, baseball shirts and hoodies. Youth, adult and women's sizes are available and there are lots of colors to choose from.

Shirts are available to order through April, but you must order by March 31 in order to receive them by Awareness Day. International shipping is available, but delivery will take longer.

2021 Virtual FOP Family Gathering
Call for Speakers

In the survey attendees completed after the 2020 Virtual Gathering, we heard that you want to hear from more members of the FOP community about their real-life, everyday experiences. So we're coming to the community asking you to apply to share your experience during this year's Family Gathering, which will be held online November 19-21.

From now through April 1, you can apply to be a speaker at the 2021 Virtual FOP Family Gathering. Non-English-speaking community members are invited to apply as well.

Andrew Davis is Gaming for a Cure in April... And You're Invited

FOP community member Andrew Davis is hosting an exciting fundraising event throughout April and you're invited!

Join Andrew and his friends every Friday and Saturday night in April as they stream a different Jackbox game each night starting at 8 pm Eastern Time.

FOP Bereaved Families Virtual Meetup on March 25

FOP Bereaved Families is a private support 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.

The group will meet Thursday, March 25 at 7 pm Eastern Time.

To receive information on participating in the March meeting, please email Marilyn Hair at [email protected].
Community Connections in March & April: Reading, Gaming and Meditating

Spring is just around the corner! What better way to celebrate the renewed season of life than by creating new connections in the FOP community. Time to shake off the winter grey and add some color with a variety of new activities.

This month you can participate in the following FOP community events:

  • Self-Care and Meditation Variations on Saturday, March 27 at 12 pm Eastern Time/1700 GMT. Join the Family Services team as we explore several child and adult-friendly ways to practice mindfulness, meditation and yoga breathing techniques. Translation will be available during this online event.
  • Friendship Over Pages Book Club: Vote on this spring's book choices (The Little Prince or The Power of Different) and sign up to participate in the April virtual meetup. The Little Prince is appropriate for children and adults. If The Little Prince is selected, and you have a child who is 12 or older and enjoys reading, they are welcome to join the Book Club in April.
  • Saturday Family Game Day on Saturday, April 10 at 2 pm Eastern Time/1900 GMT. Join FOP community member Joey Suchanek for a virtual zoom game of Fibbage (suitable for all ages). A question will appear on your screen and either using your phone, tablet or computer, you submit a lie to trick your friends. The better your answers, the more points you win.

If you're someone who enjoys playing video games, check out the new private Facebook group "FOP Gamers" where you can connect with other members of the FOP community who are gaming. Thanks to FOP community member Erin McCloskey for setting this up.