Going Public in a Big Way! AND Sharing Great News...

I'm at my desk in my basement office, looking at a white mug with the words " CBC Radio" on one side, and "The Current" on the other. And the big deal? At this moment it's my only souvenir of a radio interview I did this morning for The Current, the national (and very popular!) radio show that will air tomorrow morning (Friday, March 11th) across Canada.

I'm very grateful and proud to be a part of bringing awareness to the challenges of diagnosing and treating rare illness across my country (and this is huge, the program has an audience of one million listeners!).

Also on the program will be a fellow ECD patient from Ontario, a representative from the Canadian Organization of Rare Disorders (CORD), and the doctor that I often mention on this blog and who I admire more than I can ever say, the incredible Dr. Ho Ping Kong.

And I was able to share some really wonderful news during the program recording. Late yesterday we received the call that we've been anxiously awaiting for weeks. The insurance company WILL fund Kineret on a compassionate basis for one year (you're missing out on the hurrays and shouts of glee emanating throughout our household!) Nothing like leaving it to the eleventh hour to add some stress, I was an hour away from my very last Kineret syringe when the call came in!

If you'd like to listen to the broadcast it can be found on CBC Radio One, 99.1 on the FM dial in Toronto, airing at 9:30 am local time (other times in other provinces). The broadcast will be available after that on the CBC Radio website at http://www.cbc.ca/thecurrent .

Thank you to CBC Radio for picking up this story, in particular thanks to Hana Gartner (our very gracious on-air host who made my nervousness disappear immediately!), Anna Maria Tremonti (The Current's regular host who brought this story idea to the show producers), Ellen Saenger (producer for our segment who pulled all the pieces together, and who helped immensely to give me confidence in going on air!), Lara (who coordinated the morning's activities flawlessly) and to all the other behind the scenes staff whom I didn't have a chance to meet. What a great experience!