Connecting at the 2022 FOP Friends Conference and Family Gathering

After many years of virtual connection, FOP Friends returned to an in-person conference on May 20-22, in Manchester, United Kingdom.

Sixteen families turned out to re-connect, share and learn at the 2022 FOP Friends Conference and Family Gathering last month. The event, which also marked FOP Friends' 10th anniversary, included workshops, clinical visits, dental appointments and a highly popular “Friend Zone” for younger guests.

The event welcomed FOP families from the United Kingdom, Greece, Ireland, Poland and The Netherlands.

IFOPA Family Services Manager Hope Newport, CCLS, and Family Services Coordinator Karen Kirchhoff, MSPT, traveled to the UK to be part of the event.

“Seeing families in person after such a long time was great,” said Hope. “It creates a different kind of bond, especially when you see people in their element rather than on a screen.” She added that it was obvious how connected the community is, and although families stayed in touch throughout the year, how much it meant to them to be together in person again.

Hope and Karen participated in the conference to share information about research initiatives such as the FOP Registry and Family Service programs such as the Harold and Elaine Kaplan Quality of LIFE Awards and the Ability Toolbox Program. Karen met with families one-on-one before their appointments with FOP experts to discuss their physical limitations and which tools, adaptive devices and home modifications might be of help to them. There was also a full display of tools and adaptive clothes stationed outside the ballroom during the day and evening conference events. “Being able to discuss and try some of the tools is a wonderful way for families to start learning about adaptive equipment, but it is also invaluable for me to hear about the tools and strategies families are already implementing on a daily basis,” said Karen. “The learning that takes place goes both ways and can ultimately be shared with the greater worldwide community.”

Later, Hope and Karen made visits to three families who live in the Manchester area. “Hope and I were honored to be welcomed into these families’ homes where we could see the tools and home modifications they use to adapt to the challenges of living with FOP, as well as have candid discussions and the opportunity to get to know them on a deeper level.” Often these discussions provide wonderful insight into new programming ideas and levels of support that the Family Services staff can implement in their strategic planning. “It was so helpful for us to attend and learn about country-specific resources that we can refer to when supporting FOP Friends and families in the UK,” said Hope. “It’s also a formative experience for IFOPA staff to learn about the unique needs of families from other parts of the world."

The IFOPA is grateful for the opportunity to attend the event and feels the connections made are invaluable to the organization and the health of the community. Karen adds, “Networking with medical professionals and establishing relationships with community champions is essential for our staff to more effectively connect families with resources critical to their care.”

“Uniting with people around the world is the fastest, most efficient way to learn about FOP and help educate researchers and clinicians on how to best treat the disease. It’s a shared mission and it takes everyone!” Hope concluded.

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