May 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.
FOP Community Panel Discusses Advocacy At All Ages on May 24

Join FOP community members Ian Cali, Nicky Muller and Patty Pinkham as they share advocacy experiences at different stages of FOP from the perspectives of parents and children.

Participants will hear about experiences ranging from opportunities that foster independence for children and teens to supporting young adults as they prepare to take over their own care and leave home to live independent lives. The amazing creativity and life experiences of this group will make this a panel that parents of children with FOP of all ages will surely find enlightening and won't want to miss!

This online panel will be held on Monday, May 24 at 3:30 pm EDT/20:30 BST and will be offered with simultaneous translation in 18 languages.

2020 FOP Registry Annual Report Now Available

The FOP Registry is the largest and most detailed collection of clinical and medical information about FOP and those who are living with the disease—and it’s built by those living with FOP.

The key value of the FOP Registry is that data is collected over a long period of time. That means the information shows the way FOP affects people year after year. This is critical to better understanding FOP, which helps researchers, doctors and drug developers—and ultimately, people living with the disease.

Not participating in the FOP Registry? It's not too late to sign up. The Registry is available in English, French, German, Italian, Portuguese, Russian and Spanish.

You Don't Have to Own a Pair of Bike Shorts to Help #cureFOP

Whether you're an avid cyclist or just enjoy a nice bike ride, you can help #cureFOP! For the 4th year, the FOP community has been invited to participate in the Penn Medicine Orphan Disease Center Million Dollar Bike Ride.

The IFOPA's Team #cureFOP needs virtual cyclists and your ride will help us fund a new FOP research grant. This year’s virtual ride is being held on June 12 and you can ride any distance, anywhere…your community, a local park, the beach, your driveway…you can even ride on a stationary bike!

If you don't have a bike to ride, but want to help, every donation will be matched dollar for dollar by the the Penn Medicine Orphan Disease Center (up to $30,000).

Grief Awareness and Supporting Bereaved Families and Community Members in May

  • This Saturday, May 22, the IFOPA will hold two virtual meetings (one at 8 am EDT and one at 4 pm EDT) aimed at supporting the FOP community in processing grief when members of our FOP family pass. The meetings will be run by Sharon Neumann, Advanced Grief Recovery Specialist and sibling of Founding Member of the IFOPA Nancy Sando. Based on survey feedback, this meeting will only be offered in English. You'll learn from Sharon and take part in group discussions. Sign up now >

  • The IFOPA's FOP Bereaved Families Group is an opportunity for those who have lost a friend or loved one to FOP to support each other in loss and grief. In light of the recent deaths of dearly loved members of the community, the group would like to invite any interested individuals to participate in this month's meeting. Email Marilyn Hair at for more information about this month's meeting on Thursday, May 27 at 7 pm EDT.
2021 ACT for FOP Grant Program Call for Proposals

Since 2015, the International FOP Association (IFOPA) has awarded more than $1.2 million in grants through the ACT for FOP Grant Program to support research to accelerate the development of safe and transformative therapies for FOP.

We're pleased to issue this call for proposals for our 7th grant cycle; proposals are due no later than June 4, 2021.

IFOPA's Spring 2021 Progress Report Available Online

Whether you're an FOP family, donor, fundraiser, clinician, researcher or work for a pharmaceutical company, you are doing BIG THINGS to make life better for people with FOP.

In our Spring Progress Report, you'll see what you're making possible in research, family education and support, and advocacy and awareness.

Fill Your Spring with Social Fun by Joining These Fun-Focused Community Events

  • Friendship Over Pages Book Club — Launched in 2020, the IFOPA's Book Club offers caregivers, siblings, spouses, parents and individuals with FOP the opportunity to meet virtually and connect over the discussion of a community-voted book. Virtual meetings are held at the end of the month-long reading window. Vote now for the June book >

  • Teen/Tween Journaling Workshop Starts in June — It's not too late to sign up to participate in the Growth Mindset Journaling Workshop. The workshop will begin on Sunday, June 13 at 11 am EDT/1600 BST and is open to individuals with FOP and their siblings between the ages of 8 and 16. Learn more and sign up to participate >
Latest Updates on 2021 Virtual FOP Family Gathering

We hope you're saving the dates of November 19-21 for the Virtual FOP Family Gathering. This worldwide event will be open to the worldwide FOP community.

Rare Bone Diseases Featured in The Economist

On April 30, the Economist Intelligence Unit released a briefing paper, "Leaving the darkness, seeing the light: A focus on people living with rare bone diseases." The briefing paper is sponsored by Ipsen. This independent research covers rare bone diseases and the patient experience in the US and Europe with policy lessons for healthcare professionals and policymakers.

Why This FOP Mom is a Monthly Donor
Shannon Halford and her family found support and hope in the FOP community and the IFOPA after her daughter, Raina, was diagnosed with FOP.

She wants to inspire people to join her as a monthly donor in honor of Mother’s Day in May. “The IFOPA has been a lifeline,” said Halford. “Monthly donations are an important way to help ensure this amazing organization continues to serve and improve the lives of people in the FOP community.”