FOP in Philly

Posted by Karen - March 1st, 2015

Last week I attended my first “in person” board meeting of the International FOP Association. I had been looking forward to this trip, and it didn’t disappoint…

It all started on Thursday, February 19, when I boarded a plane to fly to first Toronto, and then Philadelphia. I have to say, I enjoyed that flight! Several hours, all to myself to watch movies and relax. Bliss. Ahem… Anyway, I made it to Philly safely, took a rather meandering shuttle ride to my hotel and checked in, then went to find the rest of the IFOPA group, who were meeting for a casual dinner.

The next day was when the really interesting stuff started. We began the day with a walk through the very cold streets of Philadelphia over to the University of Pennsylvania Medical School, which houses the Centre for Research into FOP and Related Disorders (aka, the “FOP Lab”).  The walk only took 15 minutes or so, but as it was about 15 degrees C below zero, that was one cold walk. I would really have liked to stop and take photos of some of the academic buildings – UPenn is one of the oldest (or was it THE oldest?) universities in the United States, and has some breathtakingly beautiful architecture – but it was too cold to stop and in any event we were ON A MISSION!

Upon arrival at the lab, Drs. Shore, Kaplan and Pignolo, the world’s pre-eminent researchers in fibrodysplasia ossificans progressiva, gave us a tour. The tour took us through lots of cool stuff, including the historic spot where the FOP gene was first identified just a few years ago.

A poster showing the cause of FOP - a single nucleotide change in the ACVR1 gene

A poster showing the cause of FOP – a single nucleotide change in the ACVR1 gene.

One of the FOP scientists describing his work.

One of the FOP scientists describing his work.















We also had presentations by graduate and post-graduate students and other researchers, all of whom were hard at work trying to uncover the secrets of FOP. I have to say that it was very, very humbling. And exciting. Right now, the FOP community is very much focused on and hopeful about the clinical trial for the potential FOP drug Palovarotene, and with good reason as it’s the first “modern era” substance to be tested for FOP – but based on our tour, it’s pretty clear that the FOP researchers are not just hanging their hats on Palovarotene and in fact are researching all kinds of other potential treatment angles.

After the lab tour, we returned to our hotel close to campus and started to work on some IFOPA board stuff. We worked hard that afternoon, then went that evening for a group supper at a nearby Japanese-fusion restaurant.

The next day was a busy one too – we stayed in the hotel and chewed over some important stuff all day, strategic-vision type stuff about making sure the IFOPA continues to be the best it can be.

All of this was interesting and cool. One of the best parts of this trip, though, was the opportunity to talk in person with other people in the FOP community. Jeannie Peeper, the visionary who started the IFOPA, is now retired and wasn’t present, but long term board member and  founding IFOPA member Nancy Sando was in attendance, and as usual I really enjoyed talking to her and seeing how she soaks up every bit of life. Nancy is one of the best role models I know of for people with FOP, in that she’s been dealing with FOP for decades but remains very active and vibrant. I also had a great time getting to know some other FOP parents and board members including (but not limited to!) Rory Otto, Moira Liljesthrom and Marilyn Hair.

Nancy and me.

Nancy and me.

With Rory.

With Rory…

With Moira.

…with Moira…

With Marilyn.

…and with Marilyn.
























Of course, all good things must come to an end, and so Saturday evening we said our goodbyes. I was up and on my way to the airport bright and ugly on Sunday morning, and I made it home to Vancouver without incident.

Definitely a whirl-wind trip. I would SO have loved to stay longer, but it was meant to be short and sweet. This was a great beginning to my time as an IFOPA board member.

PS – Are you age 15 or older and have FOP? If so, you may be eligible to take part in the drug trial for Palovarotene, a potential FOP medicine, currently being carried out by Clementia Pharmaceuticals. To qualify, you need to be having a new, active flare-up involving an arm or a leg. The trial involves some short-term travel to one of three testing sites in San Francisco or Philadelphia, USA or else Paris, France, but your travel experiences are FULLY PAID by the researchers and they make all efforts to accommodate disabilities. For more information, go to:

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