November 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.
Tomorrow is the Final Day to Register for the Virtual FOP Family Gathering

Wednesday, November 18, is the final day to register for this year's Family Gathering – a virtual, global event being held Friday through Sunday, November 20-22. Registration is free of charge and open to FOP families, health care providers, researchers and pharmaceutical company representatives. See what's on the agenda >

Even if you are unable to attend all three days of the Gathering, by registering you'll have access to the Virtual Gathering platform so you can go back and watch sessions you missed or watch your favorite session again.

Already registered? You should have received a printable version of the Virtual Family Gathering Program Guide. Take some time to explore the program guide available online.

Shop with AmazonSmile and Support the IFOPA

Support the FOP community while you shop! Simply use AmazonSmile on Black Friday, November 27, and Cyber Monday, November 30 – and throughout the holiday shopping season. Make sure the "International FOP Association" is your selected charity and a percentage of what you spend will be donated to the IFOPA.

It’s just like using Amazon, but AmazonSmile makes both shopping and donating to the IFOPA easy on you. Thank you for supporting people with FOP and their families with AmazonSmile.
Register Now for the November 24 "Social Support" Webinar

Many of us may easily use social support as a powerful tool to recover from life's stress. However, there are some important aspects of maintaining a strong social support system that are often overlooked.

Join the Resilient Living Educational Series on Tuesday, November 24, 8 pm EST/7 pm CST/6 pm MST/5 pm PST to learn about the difference between dumping and venting, how to reciprocate support and how to support from a place of empathy.

Don't miss out! This is the final Resilient Living webinar of 2020.

IFOPA Offers Dental Care Travel Stipend
A new stipend program is now available for eligible individuals with FOP and their families to assist with transportation and lodging for dental care that can best be completed by an FOP dental expert at Jefferson University Hospitals.
Two Opportunities for Connection for
FOP Bereaved Families in November

The FOP Bereaved Families group has two opportunities to meet at the Virtual FOP Family Gathering on November 20 and 21.

  1. Friday, November 20, 3:30 to 5 pm EST during the Small Group Discussions
  2. Saturday, November 21, 12:30 to 1:30 pm EST When Your Heart Hurts: Weaving the Threads of Loss and Change into the Beautiful Tapestry of Your Life! A session led by FOP family member and grief specialist Sharon A. Neumann, SPMC AdvGRS.

If you would like to attend one or both of these sessions, you must register for the FOP Family Gathering. Registration is free of charge and provides you the opportunity to also hear a research update from Dr. Kaplan on Friday, November 20, from 9 to 10 am EST.

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.

FOP Biobank is Accepting Donations Again

After a brief pause due to COVID-19, we are pleased to announce that the IFOPA’s FOP Biobank is reopen and accepting donations. The FOP Biobank collects blood, urine, saliva (DNA) and tissue (from “baby teeth”) from people with FOP. At this time, we are only able to process samples from people living in the United States.

These important samples are provided to researchers all over the world. Qualified scientists can use these samples for research that looks into factors that affect treatment and disease outcomes. 

#GivingTuesday 2020 Supports Travel for Critical Dental Care

#GivingTuesday 2020 gifts to the IFOPA will support the IFOPA’s new dental care travel stipend program. You can donate before #GivingTuesday, which is December 1, and create momentum for the big day. We also need you to help spread the word.

FOP Holiday Ornaments Available for Purchase

Share a message of hope with FOP holiday ornaments. Whether you want to decorate your tree with a message of hope, give a gift of hope or even hang in your window like a suncatcher, an FOP ornament is the perfect way to share a message of hope for those with FOP. 

The center ribbon spins inside the silver frame which gives the message "Believe Hope Wish for a Cure for FOP." Each ornament is $15 plus shipping (international shipping is available).