Archive for June, 2012

End of school year fun

June 24th, 2012

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Posted by Karen Ah, the end of the school year...  Beloved by kids everywhere, ha ha.  We've FINALLY reached that point - school in Canada ends for the summer at the end of June (and resumes after Labour Day in September).  End of the school year means a bunch of different fun events, all of which my daughter Miranda got into with gusto. Let's see...  I think first up was Sports Day at her school, which was on Friday, June 15.  On Sports Day, all the kids in the school are sorted into 4 large teams, and the students compete with their ...

“This week in FOP news…”

June 10th, 2012

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Posted by Karen I don't have any grand theme for today.  Instead, am just going to ramble about a few different things which happened recently in the world of Fibrodysplasia Ossificans Progressiva... This week the winners of the 2012 "Jeannie Peeper Awards" were announced.  The JP Awards are named after Jeannie Peeper, a wonderful woman who has FOP and who founded the International FOP Association.  The JP Awards are granted by the IFOPA each year to up to 4 individuals or groups who have contributed in an exceptional way to the FOP community.  There are 4 awards - the President's Lifetime Achievement Award (kind of ...

Miranda moves up to Brownies

June 3rd, 2012

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Posted by Karen As I've said many times before, we want our Miranda to have opportunities to do activities other kids her age do.  Fibrodysplasia Ossificans Progressiva shouldn't mean she can't do all the fun stuff that makes childhood great...  Fortunately, we've had some pretty good success with involvement in the Girl Guides of Canada. This was Miranda's second year as a Spark, which is the level for girls in kindergarten and grade 1.  Sparks has been really great - the girls meet with their leaders once a week and sing, do crafts, do some outdoor activities and go on one sleepover and one camping trip per year.  ...

Ride to Cure FOP 2012 in Calgary, deets…

June 3rd, 2012

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Posted by Karen Last week I blogged about us doing the Ride to Cure FOP this year in Calgary, Alberta.  We've now picked a site!  We'll be riding at Baker Park on the Bow River on Saturday, August 4.  After the Ride, we'll follow up with a picnic/barbecue, site to be announced (possibly at Baker Park, but we're considering alternative locations). Please support us!  An effective treatment for our Miranda's Fibrodysplasia Ossificans Progressiva has never been closer, so it's vital that we keep raising funds to enable research.  The majority of funds for FOP research comes from personal and family fundraising efforts ...