Rare Disease Foundation picnic 2012

Posted by Karen - July 22nd, 2012

Posted by Karen

Today our family went to the annual summer picnic of the Rare Disease Foundation.  The RDF is a charitable organization I’ve been involved with for a few years, and this was the third time we’ve been to the sumer picnic.  It’s a great chance for families living with various rare disorders to get together and talk, play and relax.

It was tonnes of fun…  The picnic was at the Burnaby Village Museum, which is a great location with a nice, big grassy field and good catered outdoor food.  We started off with a delish hamburger and hot dog barbecue, catered by the Village Museum, along with desserts contributed by various families (I made surprise cookies – chocolate cookies with melted marshmallow and chocolate icing on top).  Then it was fun and games, including bocce ball, yard mini golf (plastic clubs) and, of course, BUBBLES!  Check out my daughter Miranda’s efforts…

While this was going on, a valiant volunteer spent her time painting kids (and adults) cheeks, hands, ankles, etc with animals, flowers and more.

Even I got in on it with an awesome cheek dinosaur!

After a little while, a mother-son-daughter clown team also showed up and made some mighty impressive balloon animals and other creations.  Miranda got herself a lady bug and a Cookie Monster, while my son Owen got them to make him a Vancouver Canucks logo (of course).

We finished off with some great raffle prizes.  Owen ended up winning a cool kite, and I got a lovely necklace and earrings set.

It’s great to hang out with these folks, many of whom have become our friends.  OK, none of them have a child with Fibrodysplasia Ossificans Progressiva (Miranda’s disorder), but the rare disease experience is pretty universal.  There’s a lot we gain from knowing each other.


On a totally separate topic, big shout out to the Toronto and London, Ontario “Ride to Cure FOP” teams, who did their respective rides yesterday.  The Toronto group rode in honour of Valerie Herce, a young woman with FOP, and the London group rode for Brooke Connell, who is age 11 (or is it 12?? sorry!) and has FOP.  I hear that both groups had a great day, and raised lots of money for the Canadian FOP Network, our Canadian FOP charity which supports scientific research into treatment for FOP.  Great work, guys!

Speaking of which, we’ll be doing our own Ride to Cure in Calgary on Saturday, August 4, and we’d be ever so grateful for your donation to our cause…  To support us by donating on-line, go to http://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=19154.  Thanks so much to everyone who’s already donated!  Big kudos especially to connections of my brother Blair Munro, people who don’t even know Miranda personally and yet opened up their wallets to support us – these are terrific folks.  Finally, thanks also to all who have donated anonymously – we can’t see who you are, so can’t thank you personally, but rest assured that we’re very grateful and we appreciate every penny.

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