Top 5 Reasons to Participate in the FOP Family Gathering


Number 1: Guaranteed Connection

Many families we speak with share that the lack of understanding and isolation they experience in day-to-day life is one of the hardest aspects of living with FOP. We know how powerful human connection can be!

The Family Gathering is a once-a-year opportunity to see a large number of adults and children with FOP, caregivers, and family members in one place. Whether you register to participate in-person or virtually our small-group discussions, provide designated time for all members of your support network to have meaningful conversations with those who truly get it.

Did we mention that community social events are a fun way to bond over the more competitive (and sometimes silly) sides of our community as well?

Number 2: Expert Insight

The Family Gathering is THE BEST educational resource we will offer this year as it brings together the pillars of care and support in a variety of sessions and workshops throughout the weekend including:

  • The first approved treatment for FOP
  • Clinical trials
  • Off-label treatments
  • FOP expert insights
  • Safety recommendations for daily living
  • Nutrition
  • Adaptive tool and device integration or
  • Lessons learned by individuals with FOP and their family (our personal favorite)

Number 3: Exposure to Research

Research is the future of FOP. What scientists are working on today will shape future care recommendations for our community.

The Family Gathering provides a rare opportunity for families to speak directly to researchers working in the FOP field and to learn about "life in the lab" through a video tour of the UT Southwestern Levi Lab/Center for Organogenesis Regeneration and Trauma.

On-site attendees will also have the opportunity to support research directly through blood, urine, or saliva donations to the FOP Biobank

Number 4: Family-friendly Programming

At the FOP Family Gathering, there is something for everybody! Creating space for all members of the family to get involved is a driving factor of our planning. For those joining us on-site in Dallas, Texas we'll offer:

  • Pre-conference workshop for adult siblings of individuals with FOP
  • Fun Zone (for youth attendees 0-12 years old)
  • Teen Room (for youth attendees ages 13-18)

Parents will also have the opportunity to connect with the moderator for our Adult Peer Support Group, counseling psychologist Dr. Al Freedman, in a "Parent Talk" session. Al's son, Jack, lived with Spinal Muscular Atrophy for 26 years.

If you're joining us virtually, we're excited to host a family-friendly event where community members of all ages can engage in a rousing game of trivia!

Number 5: Meet Your IFOPA

The IFOPA was founded by individuals with FOP and is guided by a Board of Directors made up of community members, staffed by a team of professionals, supported by the top medical and scientific advisors, and connected to a vast network of families working together to support each other.

At the FOP Family Gathering, you can meet all layers of the IFOPA network! Whether you speaking with a Founding Member over a Zoom chat or connecting with a member of our Board of Directors, staff, or medical advisors, leaders from the IFOPA will be ready to connect with you.

The Family Gathering also provides opportunities to meet with and hear from IFOPA staff on the latest program developments and resource offerings.


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