2025 Family Gathering in Minneapolis, Minnesota
The FOP Family Gathering moves to a different U.S. city each year that it's held, bringing the community together for several days of enriching education and opportunities to learn, share and connect with others living and coping with life with FOP. The next FOP Family Gathering will be held in 2027 in the Northeast region of the United States. Learn more about our shift to an every-other-year schedule.
View the Photos from the 2025 FOP Family Gathering
Watch Recordings from the 2025 Family Gathering
For translated subtitles of the recordings, follow these instructions. Please note that the subtitles provided are auto-translated. The translations are not professionally translated and may include some inaccuracies in names and meaning.
Insights from Staff, Community Members and Friends of the FOP Community
- Welcome Session and Strategic Planning Discussion: IFOPA staff and two members of the Board of Directors share an update on the organization’s 2025 strategic planning efforts, highlighting key priorities for strengthening programs, research, and community support.
- FOP Community Panel: Community members Emma Albee, Joe Hollywood, Trisha Wheelock, and Alexandra Rodriguez share their insights on adaptive equipment, independence, and the importance of support during transitions.
- Resilient as Always—Advocating for FOP Through Story: Dean Wang, undergraduate student and author, shared his experience getting involved in the FOP community and writing his children's book.
- Findings from the Health Insurance Literacy and Burden of Access Study: Patti Engel, RN, BSN, President and CEO of Engage Health, presents key data from the Health Insurance Literacy and Burden of Access Study to help families better understand the FOP community’s health insurance profiles, coverage, and familiarity with insurance terms and processes.
FOP Medical and Dental Expert Insights
- FOP Treater Insights on Care Management and Questions from the Community: This session features FOP specialists discussing care management topics—including the gut microbiome, off-label treatments, and dental and skin issues—followed by an in-depth Q&A with expert clinicians.
- Spinal and Chest Wall Challenges in FOP—Expert Medical and Surgical Insights: Drs. Fred Kaplan, Robert Pignolo and Paul Sponseller share an in-depth presentation of the FOP-related factors contributing to spinal and chest wall challenges and what we've discovered as potential pathways to address those issues.
Take A Look at What the FOP Family Gathering is All About
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2025 Family Gathering ThemeLighting the Path: Finding Strength in Every JourneyAs we travel to the North Star State, we are excited to embrace how light embodies the FOP community spirit and guides us all through the winding path of life with FOP. Even when the journey is unclear, light (and our community's shared mission and work) provides steady progress, paving the way forward in research, advocacy and care-related efforts. Together, we illuminate the way for a brighter, more empowered future. Hear more insights on 2025 theme in our blog post featuring insights from members of the Family Gathering Planning Committee. |
About Our Visionary Partner:
Regeneron is a leading biotechnology company that invents, develops and commercializes life-transforming medicines for serious diseases. Founded and led by physician-scientists, our unique ability to repeatedly translate science into medicine has led to numerous approved treatments and product candidates in development. Learn more at regeneron.com.
