Living with FOP can mean navigating pain, uncertainty, grief, and the constant awareness that a flare-up can change plans in an instant. For parents, caregivers, siblings, spouses, and partners, there can be a different but deeply connected set of challenges. 

Building skills to navigate these experiences is an important part of supporting the emotional well-being of the whole family. 

As part of the IFOPA’s Resilient Living program, we are introducing a new four-session mindfulness series designed specifically for people living with FOP and the people who care for them.

This is the first program focused specifically on mindfulness, and we're developing it with the FOP community at the center. 

What is mindfulness? 

Mindfulness is often associated with meditation, breathing exercises, or simply “being present.” But it can be much broader than that. 

Jon Kabat-Zinn, whose work provides the foundation for this series, defines mindfulness as “awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally.” At its core, mindfulness is about developing greater awareness of connections between our thoughts, emotions, bodies, and behaviors. 

Built for the FOP Community 

One of the most important aspects of this pilot is that it is being developed in collaboration with the FOP community. Fran Benedict of Simply Mindful is creating the workshops alongside a member of the FOP community and the IFOPA to make sure the content reflects the realities of living with FOP. 

The series will recognize that the experiences of someone living with FOP and those of a parent or caregiver are related, but not identical. Sessions will explore topics such as fear of flare-ups, grief, guilt, pain, uncertainty, and the emotional weight of living with a progressive condition.

Preliminary plans for the four sessions include: 

• The Body as an Ally, Not Adversary: Reframing the relationship with a body whose own repair process works against it—foundational to everything that follows.

• Pain and Suffering as Distinct Experiences: The physical reality of a flare-up versus the layer of fear, guilt, and emotion (sometimes suppressed) built on top of it—including how that added weight accumulates over time for both people with FOP and the parents who carry it alongside them.

• Body Awareness, Breath and Sensation: Practices built specifically without breath-holding or counting techniques; for caregivers, this extends to noticing their own tension and stress, not only their child's.

• Living with Fear and Uncertainty: Working with fear of the next flare-up and other challenges of life with FOP without letting it shrink daily life, and naming the disease experience itself as a source of trauma—closing with space for shared reflection as a group.

The pilot will consist of four live sessions, approximately 25-30 minutes long. Sessions will combine a short teaching with a reflection or mindfulness practice that participants can use in their own lives. 

Because the FOP community spans multiple time zones, and because work, health, and everyday responsibilities can make live participation challenging, every session will be recorded and available afterward. 

Most importantly, this is an opportunity to learn and connect. 

Interested? Let us know! 

Before the dates are set, we are asking the community to complete a short interest form. Your responses will help identify the best times for the sessions and inform the development of the program. 

Complete the short interest form to let us know you’re interested. Dates will be announced once the community’s availability has been reviewed. 

Mindfulness cannot change FOP or make difficult experiences disappear. But it offers another set of tools for meeting those experiences, and life beyond them, with greater awareness and support.