IFOPA 25th anniversary celebration!

Posted by Karen - November 16th, 2013

Posted by Karen

Last week was SO amazing – my family and I were in Florida for a terrific event.  The International FOP Association is 25 years old (!) in 2013, and to celebrate, they threw a big, big party!

I picked up Miranda and Owen up from a school a bit early on the Tuesday before last, and we drove down to Seattle to pick up my husband, who was there on business, and then we stayed in an airport-area hotel overnight before flying the next day to Orlando.  Amazing bit about our trip  – we changed flights in San Francisco, and who should happen to be on our new flight but Carol Zapata Whelan, her husband and her son, Dr. Vince Whelan!  (For those not in the know, Dr. Whelan is famous as the first medical doctor known to have FOP, and Carol wrote a book about her family’s experiences with FOP.)  I knew they live in California, but honestly, what a fluke thing!

Anyway, onto fabulous Florida…  The event was held at a gorgeous hotel and convention centre called the Gaylord Palms resort (here’s a link if you want to have a look at it: http://www.marriott.com/hotels/travel/mcogp-gaylord-palms/).  First up for us on Wednesday was a quick look around the hotel, which has, among other things, a huge pool area, an alligator feature and restaurants galore.

Owen, Miranda, their Baba (grandma) and GATORS in the hotel

Owen, Miranda, their Baba (grandma) and GATORS in the hotel

Me and Miranda and dolphins 07-11-2013 8-51-25 PM

Me and Miranda near the dolphin statue in the convention centre

Next, Miranda had an appointment with Drs. Kaplan, Pignolo and Hsiao (hope I spelled that one right) – the first two are medical experts from the UPenn Centre for Research into FOP and Related Disorders, and Dr. Hsiao works in California and treats a number of FOP patients out there.  Seriously folks, what these people don’t know about Fibrodysplasia Ossificans Progressiva is…  well, pretty much not known by anyone else in the world.  These good doctors talked to us generally about Miranda’s range of movement, symptomatic treatment options, and also the unfortunate fact that Miranda, at age 8, is experiencing a flare-up which is limiting movement in her right knee (boo).  Did they have anything new to tell us right then and there?  No, but we didn’t expect that.  We’re just happy to have these extremely knowledgeable experts caring for our girl and following her progress.  And, who knows, in some small way we may be contributing to their expertise in learning about FOP.

After the medical appointment, it was off to the hotel pool!  That was totally a blast – we all had so much fun.  Right then and there, we also started meeting other FOP families.  I don’t specifically have permission to ID them here, so I’ll just say that one has a little girl exactly Miranda’s age with FOP, and the other has a boy a couple of years younger and I know his mom from Facebook.  It was fun to meet these folks and share stories and experiences (in between supervising kids in and around the pool play structure, LOL).

Miranda at the pool!

Miranda at the pool!

That evening, which was Thursday, there was a “meet and greet” event at the convention centre.  That was an opportunity mostly to just talk and get to know each other.  I met soooo very many people whom I had only previously met over the Internet, plus a number who were previously unknown to me.  The kids had fun too, especially Miranda.  Miss M linked up with her best FOP bud Erin McCloskey, and from that moment forward the girls were inseparable for the whole weekend.

Miranda, Erin and another friend

Miranda, Erin and another friend

Suzanne in mouse ears 07-11-2013 8-14-47 PM

Suzanne rockin’ some mouse ears!

Friday was a free day, so along with my mom and dad, who were also there for the event, we went that day to Universal Studios Islands of Adventure.  Our kids had really enjoyed that park when we visited for Miranda’s Make-A-Wish trip earlier that year, so we figured it merited a repeat visit.  Highlight (?) of that expedition – I got completely soaked on the Jurassic Park water ride with M and O!

Saturday was the main day for the gathering.  The IFOPA put on a number of presentations by geneticist Dr. Shore and Drs. Kaplan and Pignolo, among others.  The gist of it all?  FOP research is on the very cusp of new and super exciting stuff!  Preliminary studies will be shortly starting, through a pharmaceutical company, for identification of certain biological markers of FOP flare-ups (necessary to know for drug testing), and also in the not too distant future, clinical testing of potential FOP drugs is hoped and expected to begin.  No, we don’t know any exact time frame for how this will all progress, but the fact that it’s even being actually planned is TOTALLY exciting.

OK, Can-con time…  Two of the presenters that day were Canadians!  Very cool.  One was a dentist, Dr. Friedman, from Ontario who has lots of experience treating patients with FOP (FOPers have unique dental needs and complications) and with special needs people in general.  The other was the head of a Canadian pharmaceutical company working on getting some of this drug testing stuff going.  As for FOPers, there were 3 families attending including ours, plus the father of another FOPer who stayed at home in Canada.  I felt a few moments of Canuck pride at our Canadian contributions, *sniff*.  ;-)

Of course, all of this was great for the adults, but the kids lost focus after a while, so I left my husband and Erin’s mom, Suzanne, to hear the afternoon presentations while I went with my mom to take our kids plus Erin for another time at the pool.  Again, lots of FOP people there, which was fun.  Miranda and Erin enjoyed sunbathing and dipping in and out of the pool.

Saturday night was the culmination of it all, with a fancy dinner and dance in the convention centre.  What a great time it was!  Again, we met and talked to so many people, not to mention dancing up a storm.  We also had a photo-op with our beloved Jeannie Peeper, a lady with FOP who started the IFOPA 25 years ago as a pen-pal club.  Wow, the IFOPA has come so very, very far since that point – today, it’s a well-established charity which is able to contribute hundreds of thousands of dollars to FOP research.  It’s absolutely fair to say that without the IFOPA’s efforts, FOP research would be far, far behind where it is today.

Owen, Jeannie and me

Owen, Jeannie and me

And then, it was over.  What a whirlwind event!  It all seemed to go so fast.

Still, we had one more day before leaving, so we decided to spend some time in the great outdoors of Florida.  Specifically, we took ourselves to another fun theme park, Gatorland!  Gatorland is a place which cares for many hundreds of gators, turtles and crocodiles and lets the public in to see them all in the midst of a natural Floridian environment.

Our kids and a big ole' gator swimming toward them...

Our kids and a big ole’ gator swimming toward them…

Late in the afternoon, we did one last thing, which was to meet up with our good friends the Blonk family from the Netherlands.  I got to know Saskia Blonk over the Internet in 2007 when her son, Yorick, who is a year older than Miranda, was diagnosed with FOP just a few months after Miranda’s diagnosis, and we met for the first time in 2009 at an FOP meeting in London, Ontario.  On this occasion, we got together for a round of mini-golf!  So fun.

Saskia, Rianna, Yorick and Ehrling Blonk (they travelled much further than us for this conference!)

Saskia, Rianna, Yorick and Ehrling Blonk (they travelled much further than us for this conference!)

After that, we capped off the evening with dinner at a local restaurant, and again had the opportunity to talk with our friends about life with FOP and many more things.  I like these folks so much.

On Monday, it was finally time to go home.  Luckily our plane flight back to Seattle (from where we drove, the next day, back home to Vancouver) was pretty uneventful, except for Owen losing his hoodie jacket and new Harry Potter toque in the Houston airport on stopover (boo).

This was such a great trip.  I loved it and had a wonderful time, and I’m so sad that it’s over!  I can’t wait for the next FOP meeting.

And what about Miranda?  I had a bit of niggling worry that she might be stressed out by the appearance of some of the folks with very advanced FOP.  Was she?  Maybe a little, but if so, it was only momentary.  Instead, she just had lots of fun with her pal Erin and some other kids.  And, sweetest and most emotional moment for me, she said at one point, “You know what Mom?  I like being with other people who have FOP, because then I’m not different.  I’m just the same as everybody else.” (SOB!)

As I write this, I feel a big outpouring of love to everyone who came to this conference, and to the worldwide FOP community in general.  This is such a special group, and I’m so glad I had the chance to meet so many of you.  I can’t wait ’til next time!

 

4 Responses to “IFOPA 25th anniversary celebration!”

  1. helen munro says:

    Good blog Karen!!!

  2. helen munro says:

    What a wonderful meaningful experience it was , meeting other families touched by FOP! I’m glad my knee held up, seeing so many folks with far greater problems really put everything in perspective for me! THX to the IFOPA for putting on this great event.

  3. Steve Borsa says:

    Interesting blog Karen. You guys really had a lot of fun! We keep praying for Miranda recovery. Looks like progress is being made FOP .
    Good luck and God Bless

    Steve /Marie Anne

  4. Saskia says:

    It was so nice to meet you all in person again !!!



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