Stuff leading in to summer…

Posted by Karen - June 23rd, 2013

Posted by Karen

I must say, I am SERIOUSLY looking forward to July…  Because almost all my kids’ activities will be finished.  ;-)

Between Miranda and her brother Owen, I was seriously run off my feet this week.  Especially this weekend.  Get Miranda’s schedule yesterday – first it was the end-of-season softball wind-up, then the end-of-year Brownies picnic, then a classmate’s movie/bowling birthday party.  We didn’t get home until 8 PM.

Miranda was in typical form yesterday – and by that I mean unbelievably full of energy.  Fibrodysplasia ossificans progressiva?  Ha, what’s that and why would it make me tired or affect anything I do?  Take the softball wind-up…  The kids did all sorts of running activities, relay races, etc, and were pumped to sit together in their teams and eat hotdogs and chips.  Miranda was all over that.

Mighty Miranda at the (T-ball) bat

No sooner did Miss M collect her trophy when we had to hop in the car and buzz over to the Brownie picnic.  At the picnic, she: blew bubbles, got her face painted, took part in an advancement ceremony for girls moving to different Girl Guide levels, designed a pin-on button to wear, yakked with her pals, and more.  Oh yes, and got eaten alive by mosquitos (that’s June in Vancouver for you).

“Mom, why are you making me stop playing and pose for this dumb picture?”

Next, it was her classmate’s birthday party wherein she joined 12 other kids at a movie, then for bowling.  Miranda LOVED bowling (note to self; consider looking into kids’ recreational bowling for next year).  Was she tired by then?  Nope.  I was, but not her.  In fact, Miranda had the second highest score among all the 13 kids.  As the party was drawing to a close, Miss M said to me, “Mom, can we stay here longer and bowl some more?”

Seriously, I joke about how tiring all this is, but I appreciate that we’re making some really great memories for Miranda.  Even if she ends up unable to walk someday due to FOP, she’ll be able to look back at the days when she did these fun things without limits.

Speaking of the future…  Maybe that hypothetical future day with severe physical restrictions will never arrive for Miranda.   Things are really looking better than ever in that regard.  How do I know?  Well, several days ago the FOP research centre at the University of Pennsylvania released its 22nd annual research report (a report designed for a lay audience), and it was packed full o’ goodies.  Without going into too much detail, here are the highlights:

– There are at least 2 very promising drug candidates for clinical trials in the coming years.  One of those possibilities is a medicine called Palovarotene, and it was licenced recently by a Montreal-based pharmaceutical company in conjunction with the UPenn group for further FOP development.  The other is called Dorsomorphin, and scientiests with Harvard and Vanderbilt Universities are actively refining that substance for FOP use.

– There are research centres at Oxford in the UK and in Japan and Germany where important work on FOP is being carried out.

– The FOP “natural history” survey carried out earlier this year was greatly successful, with an over 70% return rate.  The info in this survey will give the researchers much needed knowledge to help design effective clinical trials.

Yay!  We heard much of this at our recent FOP family conference in London, Ontario, but it’s so nice to see it in print too.  If you want to read this report yourself, go to www.ifopa.org, and watch the rotating banner for the link to the report which you can click on.

And…  If you want to help us reach that ever-so-wonderful goal of a treatment for FOP, please donate to the fundraiser which I and my family will be doing this summer.  On July 28, 2013, we’ll be riding our bikes and walking to raise funds benefitting the Canadian FOP Network (which provides almost all monies raised to FOP research).  To donate to one of our fundraising teams, go to www.canadahelps.org and click on Giving Pages, and then type in either   Karen and Pete   or     Owen and Miranda.  Or, reply to this post if you’d like to send a cheque, and I’ll contact you privately.  Thanks!

2 Responses to “Stuff leading in to summer…”

  1. Suzanne Hollywood says:

    Love reading your Blog…Joey had a bowling party for his Birthday this yr = Huge success!!

  2. jose valencia spain says:

    Hello Karen and Miranda

    I love reading about future treatments only think missing bureaucracy and permits, and where essential tests are already outdated, I can not hardly walk, wheelchair use, but until my 15 years I was the happiest, intone suffer from FOP, with 35 years, I hope the vaccine daily



Leave a Reply