by Adam Sherman

As mentioned in the last IFOPA newsletter, I had the unique opportunity to travel this spring with Betsy Bogard (previous IFOPA Research Director) to several companies and academic institutions to meet researchers and learn about the latest FOP research. While this was a critical part of my “onboarding," it was also a great opportunity to strengthen the IFOPA’s collaboration with these individuals and institutions.

I had already met with researchers from the University of Connecticut (Dr. David Goldhamer), Harvard University (Dr. Paul Yu) and Tufts University (Dr. Pam Yelick). My FOP "tour” continued this summer when Michelle Davis, IFOPA Executive Director, and I had the opportunity to travel and meet with the FOP research team at the University of Pennsylvania.

The first stop in our UPENN trip was meeting Dr. Fred Kaplan at The Mütter Museum of the College of Physicians of Philadelphia. This museum is the home of Harry Eastlack who lived with FOP in the earlier part of the 20th century. Harry donated his body to science as an enduring gift to the FOP community. Harry came alive as Dr. Kaplan provided details about his childhood, his family and about the people who cared for him over the years. Harry’s skeleton holds many of the mysteries of FOP and Dr. Kaplan served as the detective, highlighting some of the extraordinary findings known about FOP.

We have already learned so much about FOP from Harry, and he continues to teach us. In fact, Dr. Kaplan still uncovers new findings about FOP each and every time he visits the museum. Given how many times Dr. Kaplan has visited Harry over the  years, that’s an impressive feat!

After leaving the Mütter Museum, we met up with Dr. Eileen Shore at the Perelman School of Medicine. Dr. Shore runs an FOP laboratory at the University of Pennsylvania, and along with Dr. Kaplan, has been intensely focused on identifying the cellular and molecular pathways that lead to new bone formation in FOP. Drs. Shore and Kaplan expect that by uncovering these mechanisms, a scaffolding will be built for identifying new treatment “targets” for FOP.

Michelle and I also got to meet the researchers who work alongside Dr. Shore in the lab. We were inspired to see all their energy and enthusiasm. They were eager to chat with us about their latest investigations. Dr. Salin Chakkalakal, who has worked in the UPENN lab since 2007, was presenting the next day on his FOP research to other investigators in the Department of Orthopedics. Michelle and I dropped in on the presentation and got a window into all the exciting progress that’s being made at UPENN.

We could not have had a more powerful ending to our trip than attending a special guest lecture for first year medical students at the Perelman School of Medicine. The guest lecturer was Ian Cali, who lives with FOP in the New Jersey area.

Ian did an incredible job describing what it was like to live with FOP. I was humbled to hear Ian’s story and to see his bravery. Ian seems more than willing to challenge any limits of FOP and lives his life exactly how he wants to (Ian is an inventor and has started a pretty cool app company). Although I went to UPENN to learn about FOP research, I walked away realizing that I still have the most to learn from those who live with FOP.