First Ever Regional Gathering Draws FOP Community to St. Louis

The weekend of November 4, 2016, found members of the FOP community gathered in St. Louis, Missouri


Fifty individuals living with FOP and their families came together to share stories, catch up with old friends and make newfriendships, and learn from the clinicians and researchers who led presentations throughout the weekend. In total, there were 75 people in attendance at the Gathering.

Many thanks to the tireless work of Lori Henrotay who had the initial idea for a Gathering in St. Louis and then led the charge on organizing and hosting the Gathering with co-chair Debbie Hazlett by her side. (Photo left to right: Lori Henrotay, Dr. Martin Schmidt and Debbie Hazlett)

FOP individuals also had the opportunity to have a clinical appointment with Drs. Fred Kaplan and Bob Pignolo. Some of the attendees hadn’t seen an FOP expert for 20 years or more, so these were very important appointments. Thanks to Amanda Cali and Julie Schmidt for coordinating these appointments.

Dr. Fred Kaplan kicked things off on Saturday morning with an FOP “State of the Union.” Throughout his presentation, that traced the history of FOP from the sixteenth century through to the groundbreaking discovery of the FOP gene in 2006 and the progress that has been made since then, Dr. Kaplan stressed, “The real message is hope."

“As long as research is going on, we can’t lose,” he said. “Because our hope is anchored in the reality of knowledge and a real path toward treatment.”

The Gathering lasted through early Sunday afternoon. Michelle Davis, executive director of the IFOPA, was thrilled with the experience.

“What an incredible weekend we had together as an FOP ‘family’ in St. Louis,” Michelle said.

“When I say family I’m referring to all of us – those living with FOP, caring for someone with FOP, researching FOP treatments and leading the IFOPA. Together, we learn from one another, support one another and we will find treatments and, one day, a cure. The fun is an extra bonus! One of the best outcomes of the Gathering was seeing people come home and get more involved – joining the IFOPA’ers Facebook page and applying for L.I.F.E. (Living Independently with Full Equality) Awards.”

Visit the IFOPA Flickr page to see photos from the event.






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