FOP family meetings are great

Posted by Karen - July 2nd, 2017

On the weekend before last, we attended the Canadian FOP Network’s FOP Family Conference. By “we”, I mean me, my daughter Miranda, my mother-in-law Kirsten, and my parents, Helen and Malcolm (Pete and Owen stayed home because of Owen’s ball hockey playoffs). It was so wonderful!

Our Canadian community of folks affected by fibrodysplasia ossificans progressiva is small. By population we should have about 16 or 17 people, and when I count in my head the number I know of, that’s about right. We had 12 FOP people at our conference, and only 1 was international, so that means we had close to 3/4 of Canada’s known FOP patients in attendance. Not bad!

It was a short conference – we had one day of FOP clinical appointments with doctors, followed by a casual reception that evening, and then a day of presentations with a dinner at the end. As always at these things, I wish it could have been longer – but realistically it was about as long as it could have been.

So here’s how it went… We flew in on Thursday, and on Friday, Miranda had a clinic appointment with Drs. Fred Kaplan and Bob Pignolo. Between the two of them, these guys have seen more FOP patients than any other physician in the world, and what they don’t know about FOP is probably not known by ANYBODY. As such, getting a chance for an appointment with these experts is super duper valuable. The clinic appointment was where we got to ask questions, review existing information, and generally make sure we’re doing everything as right as we can. That same day, Miranda also took part in a special session with the doctors and a few other researchers, but I’m not sure how confidential that project is, so will say no more… Anyway, this still left us with quite a bit of extra time. And what did Miranda want to do? SHOP, of course! She paraded her mom, grandmothers, and grandpa through a dollar store, a book store, a yogourt shop, and more (typical!).

Miranda at the closing dinner, sporting her new hair clip from Friday’s shopping!

At the end of Friday, we attended the meet-and-greet reception for conference goers. This was a great chance to talk with people we hadn’t seen in a long time, get caught up, and generally have fun. Miranda and I spent a fair bit of time at this reception speaking with our pal Nancy Sando, the sole American attendee, and also a founding member of the IFOPA. Nancy is one of my favourite people in the FOP community, so I was REALLY glad she was there. Miranda asked Nancy some important questions about how her power wheelchair works, because Miranda will be getting her own soon. Valuable opportunity!

The next day, Saturday, was the conference day. I offered to Miranda to let have her sit in on the sessions – at age 12, she’s old enough to understand a fair bit of it. As it happens, though, Miss M preferred to hang out most of the time in the youth room where there were other kids; fair enough. In any event, we had a lot of interesting and important presenters that day. We heard from the following (not necessarily in this order):

– Dr. Fred Kaplan of the UPenn FOP research lab, who presented an overview of FOP research from the earliest recognition of the condition (which was I think in the 1700s?) to the present. That was quite a bit of ground to cover, but he did it in a concise and understandable way.

– Dr. Bob Pignolo, who was until recently with UPenn but is now with the Mayo Clinic, who presented information about joint movement in FOP patients.

– Representatives of Clementia and Regeneron, two pharmaceutical companies engaged in clinical testing of potential FOP drugs. Clementia will probably be beginning Phase 3 testing of its medication, Palovarotene, later in 2017. As for Regneron, it has recently completed a Phase 1 test of its Activin A blocking medication, and expects to move on to Phase 2 in the near future.

– Adam Sherman with the International FOP Association, who talked about the FOP Patient Registry, an important tool to aid FOP resesarch.

– Dr. Toshifumi Yokota of the University of Alberta, who discussed his team’s research into using DNA-like molecules to block FOP activity. This work, while still in its early days, was very exciting to us because it’s happening IN CANADA! As far as we know, this is the first significant FOP research work in the great white North.

Board member Debbie Dizon, me, Adam Sherman of the IFOPA, and our president, Carrie Connell.

Board member Debbie Dizon, me, Adam Sherman of the IFOPA, and our president, Carrie Connell.

In addition to all of this amazing stuff, we also had an FOP patient panel. Brian Lachance, Ian Brodie, and Nancy Sando all talked about their experiences with reslience and FOP, and tips they have for remaining independent. As always, the patient panel was a definite highlight of the day. This was the one presentation which Miranda DID sit in on, and I hope she made some mental notes, because this was good stuff.

Finally, the conference ended with a lovely dinner.

We learned an awful lot from this conference, but honestly? Best of all was the opportunity to be with other FOP families, and to be reminded that we are not the only ones dealing with this frustrating condition. Sometimes FOP can be a very lonely experience, but conferences like this one are so extremely helpful in keeping us grounded.

Miranda with Jaxon, a boy who has FOP, and his brother Aiden.

Miranda with Jaxon, a boy who has FOP, and his brother Aiden.

 

PS – On August 6, 2017, we will be doing the Walk for FOP in Calgary, Alberta. Please support our cause! We would be delighted to accept your donation on-line at www.walkforfop.com, or the old-fashioned way via cheque (contact me privately and I’ll tell you where to send your donation). Thanks!

 

 

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