October 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.
Only 30 Days Until the 2020 Virtual FOP
Family Gathering

The Virtual FOP Family Gathering will be here before we know it. We want to make sure you have the information you need to participate in all the fun-focused and learning opportunities we have in store.

You can now sign up to take part and receive additional information about all the connection-focused activities being offered throughout the Family Gathering including:



Don't forget to check out the preliminary itinerary outlining the 14 different presentations led by FOP medical experts and subject-matter experts from around the world.

Still need to register for the Virtual Family Gathering November 20-22?
Congratulations to Amanda Cali – Nominated as a Global Genes RARE Champion of Hope!

2020 marks Amanda Cali's 25th year volunteering in the FOP community. From supporting families, especially those newly diagnosed, to hosting Mothers' Retreats to championing FOP research, care and advocacy to developing and supporting cutting-edge programs like Ability Toolbox to helping establish both the International President's Council and International Clinical Council on FOP to having the vision for the remarkable Tin Soldiers documentary and Global Outreach Program, Amanda's impact has been and continues to be remarkable.

Join us for the Virtual RARE Champions of Hope Celebration on November 12 where we will find out if Amanda is one of the 2020 Honorees. The event begins at 7 pm ET. Complimentary registration is now open.

IFOPA-Supported Research Activities Continue to Grow

The IFOPA just closed the call for proposals for our new Preclinical Drug Testing Program and we're about to announce which institutions were awarded 4 ACT for FOP drug development grants. We're also busy supplying FOP mice through the FOP Mouse Program. Your support keeps advancing FOP research.

THANK YOU to our Pursuit of a Cure Donors

The summer's In Pursuit of a Cure Campaign was an unprecedented success! This single campaign raised more than $525,000 to fund the IFOPA'S first-ever research grant in gene therapy and 4 new ACT for FOP drug development research grants and other IFOPA-led research initiatives.

But it wasn't just all about the money raised. Facebook posts on the days of the virtual event had a reach of nearly 16,800 and reactions of more than 3,200. In addition, the FOP community learned more about gene therapy watching a Gene Therapy Basics video and Introduction to Gene Therapy in FOP webinar.

We are grateful to the generous donors who made this research dream a reality!
Be on the Watch for IFOPA's 30 Days of Gratitude

2020 has been quite a year, but we still have MUCH to be grateful for. Expressing gratitude helps people feel more positive emotions, relish good experiences, improve their health, deal with adversity, and build strong relationships. People feel and express gratitude in multiple ways. Giving thanks makes you happier!

During the month of November, the IFOPA will post a message of gratitude on our social media channels each day.

Call for Nominations - IFOPA Board of Directors

The IFOPA's Board of Directors is a committed group of volunteers who serve the IFOPA with their time, talent and treasure. While serving on the Board, they each serve on at least one volunteer committee, make a personal financial gift to support our mission-critical work and fundraise on behalf of the IFOPA.

The IFOPA's Board Development and Nominating Committee is currently evaluating the skills needed for people to join our Board in 2021. Those with skills in finance or scientific research & drug development are especially needed.


If you're interested in serving on a committee, please send an email to together@ifopa.org.
Register Now for the October 28 "Nutrition and FOP" Webinar

Join presenter Natalie Ledesma, MS, RDN, CSO, CLT and IFOPA Family Services Manager Hope Newport on Wednesday, October 28 at 8 pm ET/7 pm CT/6 pm MT/5 pm PT for this special webinar on FOP and nutrition issues.

Natalie is a seasoned registered dietitian nutritionist with over 20 years of experience. Creating this presentation specifically for the FOP community, Natalie will address FOP-related nutrition issues and some helpful ways to manage challenges including, for example, limited jaw mobility and decreased appetite.


Friendship Over Pages Book Club to Select Their Final Book of 2020

Fall is coming and it's the perfect chance to curl up with a blanket and a good book. Join the FOP Book Club for our last read of 2020 and get a free bookmark sent to you as a fun bonus!
FOP Bereaved Families Hold Virtual Meetup October 22

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.

In the October meeting the group will continue with their discussion of the book Resilient Grieving by Lucy Hone (available at AmazonSmile)

Date and Time: October 22 at 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.

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).

FOP Ashley’s Cure Finding a Cure Gala Goes Virtual This Thursday, October 22

The Martucci Family is hosting the 4th FOP Ashley’s Cure Finding a Cure Gala as a virtual event this Thursday, October 22 at 7 pm ET to fund research for the University of Pennsylvania FOP Research Lab and the IFOPA.

Bike From Home for B.A.D. to the Bone

Looking for a good reason to go for a bike ride? Join the Henke Family during the month of October to be part of their virtual event - Bike Across Delaware/B.A.D. to the Bone.

FOP Community Responds to Call for Research Volunteers

The IFOPA often assists researchers in recruiting volunteers for FOP research surveys. In September we were busy recruiting for 2 research surveys plus the IFOPA's FOP-PROMPT Development Study.

In 19 days FOP community members filled 3 clinical studies - a total of 113 research interviews.

Thank you for volunteering to advance FOP research!!