Friends With FOP

Posted by Karen

Last Saturday night, my husband Pete and I went to the Rare Disease Foundation “Rare Finds” gala event.  Holy smokes, it was amazing…

Before I tell you all about it, I’ll begin by explaining that the Rare Disease Foundation is a Vancouver-based charity focused on, you guessed it, rare diseases.  The organization has two purposes – to provide a local community and support group for families dealing with rare disorders, and to provide “micro-grants” to health care providers and researchers needing just a bit of money to get a rare disease-related care and/or research initiative off the ground.  I’ve been involved with the parent group side of RDF for a few years now, and I must say that it really is terrific.  OK, so my RDF peeps don’t experience the specifics of Fibrodysplasia Ossificans Progressiva like we do at our house, but they’ve got their own rare disease concerns, and we can all relate well to each others’ experiences.  I’ve made some valued friends through that group.

Anyway, back to the gala…  This was RDF’s major annual fundraising event, and this year it was held at, wait for it, the Vancouver FERRARI AND LAMBORGHINI (did I spell that right?) DEALERSHIP!  What a totally amazing venue…  They had moved most of the cars off the showroom floor, but they left two of them behind for us to drool over admire.

It wasn’t all standing around and chatting and looking at cool cars, though.  There was some incredible food…  Chefs from a bunch of premier Vancouver restaurants volunteered their services to prepare appetizers and/or desserts at a bunch of booths which were set up in a circle, and gala-goers got to sample the wares at each booth and then vote for favourites by depositing a little marble into a glass jar located at each table.  Interestingly, I found out later that the winners were a chef who prepared a sort of high-end version of a smore, and a chef who prepared, if you can imagine, mini yak tacos (yes, that was yak).  I didn’t vote for either of these, but they were good. 

There was also, of course, the obligatory silent auction, with lots of very cool things for sale.  I was sorry to advise my kids later on that the billing got too high for us to get the hockey stick signed by all the Vancouver Canucks - too bad.  However, Pete and I did successfully bid on a gourmet dinner for 4 to be delivered to our home.  Looking forward to that, yum yum.

Pete and Karen, swanky gala-attending types and big spenders on silent auctions...

There were lots and lots of glittering, wealthy-looking people at this gala, which is just what RDF needed…  Celebrity watchers noted the presence of 2 or 3 of the “Real Vancouver Housewives”.  This is all good, because I understand that the RDF raised about $115,000.00 from this event!  Wow and more wow, such a fantastic result.

Apart from being a great cause, it was lots of fun.  Pete and I got to hang out there with some of my RDF friends, all dressed up and sparkling.  These are parents of kids with disorders such as Prader-Willii Syndrome, PVNH, Maple Syrup Urine Disease, Dup 15q, undiagnosed disorders and more.  These are all fantastic and cool people, and I’m glad I know them.  Also glad we all got a fab night out!

My girl Miranda, the reason why I'm involved with the Rare Disease Foundation.

PS – Update on last week’s blog – luckily, Miranda didn’t suffer any FOP-related effects from the heel injury which I talked about.  She made it through the 7-10 days post-injury with no FOP flare-up developing.  The pain and swelling from the injury completely went away within a couple of days, and didn’t recur.  PHEW…