I share with you a letter from a fellow IS family, who says it better than I could.
From: Marissa's Bunny
Sent: Wednesday, September 23, 2009 3:26 PM
To: Ken Lilly
Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness
Week Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's Bunny.If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.-
Mike Marissa's Dad