FOP impacts the entire family. That’s why we’re passionate about offering a wide variety of resources for families and supporting you through every unique stage of life with FOP.
We’re grateful for each of you who participated in our community in 2023 and look forward to continuing to see you in 2024. We hope you’ll join us in one of the following continued or new programs.
FOP Adult Peer Support Group
Meet monthly with fellow English-speaking adults with FOP. Moderated by counseling psychologist Dr. Al Freedman, this group offers a safe space to connect, share challenges, ask questions, and process with individuals who can relate to your life.
“It can be difficult to talk about living with FOP,” said Kyle, a member of the support group. “One of the biggest fears is being misunderstood or not feeling like you’re connecting with who you’re talking to because they haven’t been in your shoes. But in the monthly Adult Peer Support Group meetings, there’s never been a topic brought up by anyone where there wasn’t a connection made by at least two peers offering support and advice.
FOP is a mental and physical battle every day, but since being a part of this peer group meeting, I feel like mentally dealing with FOP has improved because of having that interaction where people understand.”
FOP Caregiver Peer Support Group
Caring for a loved one with FOP is a unique experience that many people can’t relate to. You deserve a community that understands your life and encourages you through the highs and lows. In our monthly peer support group, connect with fellow caregivers to get questions answered, share your experience, and support each other as you support your loved ones.
“At the Dallas Family Gathering, my husband and I attended the Parents’ Support group led by Dr. Al Freedman. It was a profound experience to be in a room full of parents who completely know what it is like to parent a child with FOP. We had a very candid discussion about how it affects us all differently, especially between mothers and fathers, and even stepparents. We were in different ages and stages with our children, but it was very validating to hear all the different stories and responses, and all without judgment. Dr. Freeman was the perfect moderator for the group, giving us plenty of time to share, reflect and guide us through all the difficult emotions. Even those that did not share too much got a lot just by listening as it’s nice to know you’re not alone in the experience. I am excited about the chance to join the group on a regular basis!”
Tiffanie Williams
Mom to Daniel Williams (17)
The Sibling Experience: Growing Up As a Glass Child
After the success of programming specifically for siblings of individuals with FOP, we’re expanding our resources for siblings in 2024. This year, we’re excited to host an interactive Q&A discussion on March 10 between TedTalk speaker Alicia Maples (Recognizing Glass Children) and Sharon Neumann (adult FOP sibling and advanced grief recovery specialist) who will discuss what it means to be a “Glass Child” and how parents and glass children can come together to connect over the topic. They’ll also answer questions from participants live.
We look forward to welcoming parents, caregivers and adult siblings to this informative Q&A discussion!
Childhood Trauma Series
For many children with FOP and their siblings, trauma is an unfortunate, and at times unavoidable, part of childhood. Whether that trauma is the result of a medical experience, a loss of movement or occurs by witnessing or interacting with a medically compromised sibling, it can have lasting effects on the individual. This two-part series will focus on the impact and stages of healing for children who experience trauma.
Save the Date for April 15 and 29!
New Handouts
This year, we are planning to publish four new resources to help you navigate life with FOP.
- Explaining FOP to Children
- Immunizations and FOP
- Ear Nose & Throat (ENT) Care and FOP
- Skin Care and FOP
Resilient Living Program: Connecting and Empowering the Body and Mind
Our Resilient Living Program equips families with the skills and support they need to navigate life with FOP. This year, join members of the FOP community and outside experts as we explore the interconnectedness of the human body and how our breath, circulation, diet, sleep and sense of purpose can all impact our daily well-being and play a larger role in each individual’s health journey.
In this series of sessions, Connecting and Empowering the Body and Mind, we’ll be diving into these individual topics to learn how awareness and small steps can create a big change.
Watch for more information.
2024 Advocacy Series: Building Your Support Network
A multi-faceted network of specialists and resource experts is crucial to living life to the fullest. But it can be overwhelming to find and build the right support team. At the 2023 Family Gathering, the Wray family spoke about the importance of having a network of friends, specialists and advocates to navigate life with FOP.
Watch their story to prepare for our 2024 Advocacy Series on building support networks. Throughout the year, you’ll get practical advice from outside experts and FOP community members on finding the support you need to live a full, meaningful life.
Advocacy Series community panels and webinars will be hosted on Zoom video conferencing and simultaneous translation will be provided in a variety of languages.
2024 FOP Family Gathering
We are excited to announce that the 2024 FOP Family Gathering will be held in Denver, Colorado November 7-9. The Family Gathering provides opportunities to meet others in the country living and coping with FOP and to have their questions answered by leading experts in the field. The whole family is invited, and onsite childcare and children’s activities will be provided.
The Family Gathering is held in a different US city each year and we are excited to bring it to Denver, Colorado for the first time! To lessen the burden of attending the Family Gathering, the IFOPA has developed a travel and lodging assistance program. The application window will open on March 1. The IFOPA will be sharing a preliminary agenda, airport transportation information and registration details in the coming months!
