Archive for May, 2012

Ride to Cure FOP comes to Calgary

May 27th, 2012

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Posted by Karen OK, you had to see it coming...  Hot on the heels of my blog last week summarizing the 21st annual Fibrodysplasia Ossificans Progressiva research report, here's what my family is doing to support the drive for a cure: we'll be doing the "Ride to Cure FOP" in support of our FOP charity in Canada, the Canadian FOP Network. What's the Ride, you ask?  A couple of years ago, the Herce family of Ontario and some friends did a bike ride from Toronto to Niagara Falls to raise money for FOP research; their Ride to Cure FOP was in honour of Valerie Herce, who ...

21st Annual FOP Research Report

May 19th, 2012

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Posted by Karen There are so many reasons to love the spring...  For me, one reason is that May is when the annual report of the Fibrodysplasia Ossificans Progressiva (FOP) Collaborative Research Project is released.  Yay!  The report is written by Drs. Kaplan, Shore and Pignolo of UPenn for a lay audience, and it tells all about the research the group has done in the previous year.  ("The group" is composed of the members of the FOP research lab at UPenn plus scientists in various other research centres.)  The 2012 report came out a couple of weeks ago, and I'll tell you all about it... As a general ...

Miranda at the Girl Guides’ “sleepover”

May 6th, 2012

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Posted by Karen This weekend I went with my daughter Miranda to a Girl Guides' event at the Southlands Riding Club/Farm in Vancouver.  My title here has the word "sleepover" in quotes because there wasn't a whole lot of sleeping going on, ha ha. [caption id="attachment_1609" align="alignnone" width="300" caption="Here's the barn at the farm."][/caption] I went with Miranda because she couldn't go if I didn't.  Because of her Fibrodysplasia Ossificans Progressiva, my girl has safety risks which the other kids don't have, and also, she needs help with dressing herself.  You can't just delegate that kind of stuff to one of the Guides' leaders, so it's off to these things ...