This week, the British Columbia 6 PM CTV News ran a series of clips about rare disorders, each on featuring a different child and his or her family. One of those clips was about us!
The clip was short, about 3.5 minutes long, but it nicely summarized the situation of living with Fibrodysplasia Ossificans Progressiva and the challenges it poses.
OK, if you’re my Facebook friend, then chances are you’ve already seen this video, but maybe there are a FEW other people out there who’d still like to see it… If you’re one of those people, click on: KAREN’S INTERVIEW.
The reason for this series of videos was to promote “Rare Finds”, which was a fundraising event run by the Rare Disease Foundation (RDF) here in Vancouver. The RDF group runs a monthly support and information group for parents of kids with rare disorders, and also funds “microgrants” to doctors and/or researchers who want to run modest-sized research projects concerning the care of children with rare disorders. Anyway, Rare Finds was a swanky cocktail type of affair, with delicious canapes, a silent auction, a live auction, interesting music and, of course, a presentation of the rare diseases video with all the clips strung together. Our family’s was the last of the 3 clips, and throughout the evening, we had a number of very complimentary comments. However, the credit goes to our interviewer, Tamara Taggart, and CTV for skillfully putting together this video piece!
Here’s hoping the RDF raised lots of money at this fundraiser.
