'Family Gathering is Such a Gift to Us All'

Attendees enjoyed new opportunities to learn and bond at the first-ever hybrid Family Gathering

In November, friends from around the world joined us for our first-ever hybrid Family Gathering in Dallas, Texas, while dozens more attended from afar.

"All of our general sessions were live-streamed and offered professional Spanish translation and AI (artificial intelligence) translation in over 20 languages. Both in-person and virtual attendees had the opportunity to connect through small group discussions, interactive workshops and community events such as the Tree of Strength (pictured below)," shared IFOPA Family Services Manager Hope Newport.

New This Year in Dallas

In addition to a virtual component, there were other new features at this year’s event, including:

  • The Teen Zone: A designated space for attendees, aged 13 to 18, to socialize
  • A Life in a Day: An immersive experience helping caregivers and family members understand what it feels like to have limited mobility (pictured below)
  • Laughing Lovebugs Yoga Session: A laughter-filled self-care opportunity
  • Sensory Self-Care Exploration: A way to discover new sensations
  • FOP Community Panel Discussion: Families with members across the FOP spectrum — from newly diagnosed to mature adult — shared their experiences
  • Adult Siblings Workshop: A place for families to learn from and share with one another

"I’m thankful for the siblings meeting, which provided a resource for healing for our family that didn’t exist before,” one parent said. “Our daughter was thankful for the connection with other siblings, and our son, who has FOP, is now able to more deeply share his journey with her."

Virtual Connection


To ensure virtual attendees had meaningful ways of their own to connect, several experiences were designed specifically for them, including:

  • Laughing Lovebugs Yoga virtual session
  • Small group discussion rooms
  • FOP and Nutrition workshop led by Marie H. Fahlberg (mother to an adult son living with FOP)
  • Trivia Night social event
  • Nutrition workshops
  • Q&A with Researchers
  • Virtual Lab Tour with the team from UT Southwestern Medical Center led by Dr. Ben Levi

"I’m grateful to the IFOPA for allowing us all to join virtually,” one attendee said. “I learned a lot about FOP, and I liked the dynamic of integrating patients and families from all over."

‘Spread the FOP Community Love’

All over is no exaggeration. This year, we welcomed 102 family members (including seven Spanish-speaking families from Mexico and Colombia) and 76 pharmaceutical team members, researchers, doctors and other healthcare professionals to Dallas. Another 169 family members and 60 pharmaceutical team members, researchers, doctors and healthcare professionals from 20 different counties joined us virtually. That is more than 400 registrants in total, and they came from 36 different countries. 

It was a privilege for IFOPA team members to see all the ways attendees bonded and learned from one another.

"Hearing families share insights from different stages of their FOP journeys during the community panel (pictured right) really stood out,” Hope said, “It’s important to have representation from lots of different phases and perspectives.

“I also enjoyed seeing adult siblings come together for a workshop designed specifically for them, where they were able to bond over shared experiences."

Hope and our entire IFOPA team realize that there are so many different aspects of navigating life with FOP, which is why we will continue to strive for diversity in programming at future Family Gatherings. Meanwhile, Hope is grateful for her experience at this year’s event.

“The annual Family Gathering is one of the most rewarding events of the year for our staff, as it offers the opportunity to connect, learn from and strengthen bonds with families, she said.

"It’s as much a gift to all of us as we hope it is to you to be able to come together and spread the FOP community love."

Watch the Recorded Sessions

We're pleased to be able to share the recordings for the majority of the general sessions. Learn more and watch the recordings

Check Out the Photo Album

Thanks to our photographer Adri Guyer for capturing many memorable moments during our time together in Dallas. You can see the photos and download them free of charge at this link

Thank You to Our Sponsors

Many thanks to our 2023 Visionary Sponsors: Ipsen and Regeneron Pharmaceuticals, Leadership Sponsor Incyte, and Friend of the Family Gathering āshibio.

We are grateful to Regeneron and Incyte for also sponsoring the Family Gathering Self-Care Sessions.

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