“Mom - how many more days til we go on the airplane to London?”  I hear this several times a day from both my kids. 

Miranda and Owen are excited because on Thursday of this week, we’ll be flying to London, Ontario to attend the first ever Canadian FOP Conference and Family Meeting.  The conference begins Friday night, and goes all day Saturday, capping off with a dinner on Saturday night.  Then, on Sunday we’ll be having our first Canadian FOP Network annual general meeting.

The CFOPN is our new-as-of-2008 Canadian FOP group.  It was formed by our President, Carrie Connell of London, Ontario.  Carrie’s daughter Brooke is now age 8 (or maybe 9 by now? not sure), and was diagnosed with FOP a month before Miranda.  If you can imagine this, it actually happens to be a major part of Carrie’s PAID JOB to set up and organize medical and rehab conferences for a children’s rehab facility!  It was, therefore, old hat for Carrie to get our first ever Canadian conference up and running…  And to give credit where credit is due, Carrie has done probably 95% of the work necessary to set up our conference.  I am in awe! 

I must also credit the amazing Amanda Cali, an American parent of a young man with FOP.  Amanda has many years experience with FOP events, and she has provided us with valuable strategic advice.  She’s also going to help us out at the event.

Naturally, Miranda and Owen don’t care much about the conference.  They’re excited about that PLANE RIDE, and also about the swimming pool at the hotel - we’ve been told it was recently renovated and is great for kids.  Awesome!  A plane ride, a pool, staying in a hotel room and eating restaurant food!!  How much more fun can you get??  ;-) 

Here's what Owen and Miranda lool like when excited!!

As for us, the parents…  This is going to be a great opportunity for us to hear speakers who can talk knowledgeably about Miranda’s disorder, Fibrodysplasia Ossificans Progressiva.  For guest speakers, we’ll have Dr. Fred Kaplan, MD and Dr. Eilleen Shore, Phd, both of the UPenn Centre for Research into FOP and Related Disorders.  Drs. Kaplan and Shore will be able to tell us about the directions FOP research will be taking, and we expect their words to be inspirational and exciting…  No pressure, docs (just kidding!). 

In addition to Kaplan and Shore, we’ll also be having Dr. Burt Nussbaum, a dentist, and Dr. Zvi Grunwald, an anaesthesiologist - both these doctors have experience with the special concerns FOP poses in their respective fields of medical care.  Finally, for more of a local angle, we’ll be hearing Dr. Jane Aubin, a Canadian researcher who will tell us about the state of bone-related research in Canada.

I think that hearing the scientists speak is going to be amazing and breathtaking.  It’s incredible for us that they’ve been able to make time in their schedules to come and speak to us.  However, listening to speakers won’t be the only attraction - we’ll also have a couple of workshops for our attendees, and these will focus on ways to cope with the daily challenges posed by FOP.

Personally, I’m also excited because one group of our conference attendees will be Yorick, a 5-year old boy from the Netherlands with FOP, and his family.  I got to know Yorick’s mother Saskia over e-mail, and we’ve had many interesting conversations about how our families handle FOP issues.  It’s going to be terrific to finally meet my e-mail pal in person!

I expect to learn and experience a great deal at this conference.  Everyone I’ve ever talked to about FOP meetings says they are not-to-be-missed events.  I do, however, also expect to find it emotionally challenging at times.  We’ve gotten used to the ways FOP has affected Miranda, but now we’ll be seeing a whole bunch of other people with FOP, including some with very advanced FOP.  In some ways, it may be like looking into a crystal ball at Miranda’s future with FOP.  That part will be difficult.  However, it’s a necessary and important part of the picture.  We’re determined to learn as much as we can from the occasion.

So…  Wish us luck, and a memorable and valuable experience!

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