San Francisco family conference

Posted by Karen - December 10th, 2017

I spent last weekend in San Francisco! Well, really I was in a hotel the whole time, but the hotel was IN Frisco…

Why was I there? It was for the IFOPA’s 2017 Family Conference. This was a chance to learn the latest on Fibrodysplasia Ossificans Progressiva, and maybe more importantly, to connect with friends in the FOP community. The conference went from Friday evening through mid-Sunday. Sadly it was just me from my family; husband and kids stayed behind (we had just WAY too many expenses this year, what with moving and so forth, for us all to go).

I flew to the conference Friday mid-day. The flight from Vancouver to San Francisco is almost a nothing – a scant 2 hours and 10 minutes in the air. Upon arrival, I decided to take my chances with the Bay Area Rapid Transit (“BART”) train system, which as chance would have it, went from the airport directly to downtown San Fran. When I got off downtown, my hotel was just a short block away from the hotel. Nicely planned, IFOPA!

The conference was at the Palace Hotel. What a gorgeous place. It’s an old SF hotel, built over 100 years ago (though thoroughly renovated and updated since then), and very ornate and beautiful. And since it’s the holidays, there were gorgeous Christmas trees and other seasonal decorations everywhere. I was truly in awe.

Me on an especially impressive "throne" in the middle of the concourse. It must be there for photo ops!

Me on an especially impressive “throne” in the middle of the concourse. It must be there for photo ops!

See what I mean about ornate?

See what I mean about ornate?

Anyway, onto the conference itself… We started the first night with a lavish dinner. I quickly found my good friends Suzanne and Alan, parents of Erin Kate from this website, and we snagged a table together. We had a terrific time eating great food and getting caught up. Both our girls had had a rough time of it in 2017 – though Erin considerably more so than Miranda – so we did a certain amount of note-comparing and commiserating. Still, that was only part of it, and we did have a lot of fun.

Me and Suzanne

Me and Suzanne

I also had the opportunity to wander about that evening and chat with other friends, some of whom I’d met in person before, and others I’d only communicated with on-line. This was truly wonderful; a really precious thing. I talked to one mom of a young woman who just recently finished her teen years, and she had lots of encouraging things to say about how her daughter’s life was going – great stuff to hear for a mother of a girl about to hit age 13. (Thanks so much, L!)

The next day was all about the latest in FOP research and development. Most interesting to me was a presentation about trends in FOP diagnosis and progression and a health “questions and answers” session. Here are some things I learned:

– At 56%, the rate of misdiagnosis of FOP is not actually as high as I had thought, and this is thanks to earlier and less difficult diagnosis of young children with FOP over the last few years. I am sure this MUST be attributable to the internet, and the incredible availability of information in the modern age.


– On a related note, younger FOP patients are less likely than older ones to have had biopsies prior to diagnosis.

– Hearing loss and restricted chest expansion are the most common non-flare-up related FOP symptoms.

– Dismayingly, there is a 3 fold increase in the number of FOP patients who develop kidney stones as compared to people in the general population. Advice for that? DRINK LOTS OF WATER for preventative purposes.

– Narcotics are not a good choice for treatment of FOP pain because narcotics actually seem to make flare-ups worse (I’m not clear on why, but there you have it).

– Immunization remains a difficult subject. At the end of the day, the only very clear recommendations are (a) don’t have them done during a flare-up, as they can exacerbate the flare, and (b) try to avoid intra-muscular injections as much as possible. I was particularly interested in this subject, because due to lower general population immunization rates (a subject which seriously makes my blood boil), Pertussis, aka whooping cough, has made somewhat of a comeback, and Pertussis could be disastrous for people with FOP and their already restricted chests. Wouldn’t you know it, though, the vaccination for Pertussis is administered in a combination shot with some other diseases and must be administered intra-muscularly. Gah.

We also heard about the latest areas of focus of the UPenn FOP lab, the FOP Registry, and more. Of considerable interest to some folks was a discussion of the use of cannabis oil to treat FOP pain.


Did I learn about any new potential treatments for FOP which I hadn’t heard of before? No, but it was heartening to hear more talk about the Clementia Pharmaceuticals Palovarotene phase 3 drug trial and the Regeneron REGN2477 phase 2 drug trial, both of which are recruiting trial participants at the present (squee!). Also intriguing was an experiment in which some young children were administered Imatinib, an already approved drug for a form of leukemia; that drug showed promise in reducing/eliminating repeat flare-ups in the test subjects – I expect we may hear more about that treatment possibility in the coming years.

On Saturday night we had another amazing dinner, and more opportunities to chat and socialize. This part was so fun! It really was great to be together with some of our extended FOP family members.

Me and my pal Jasmine

Me and my pal Jasmine

The Vancouver contingent! Stephenie, her daughter Alex, and moi.

The Vancouver contingent! Stephenie, her daughter Alex, and moi.

I missed the Sunday presentations because my plane flight took off mid-day. I understand though that it involved more detailed talks by Clementia and Regeneron about their drug candidates. I regret missing those, but it couldn’t be helped.

On the whole, this was a very enjoyable conference. I’m so glad the IFOPA can give us these opportunities to meet and consolidate bonds within our community.


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