Wednesday, September 23, 2009

A Letter from Marissa's Dad


Got an e-mail today about a very important and disturbing subject. Mike, father of Marissa (a young girl with Infantile Spasms that assault her on a daily basis), gave me his permission to share it with you.

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


Mike's a good dude and makes a lot of good points. You really should check out his blog. Well, you should be doing that ANYWAY, but especially today. :)

OUT...

3 comments:

  1. Will do....Thanks for sharing this....I will send it out...

    Cyndi

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  2. Hello -- I'm new to your blog and looking forward to reading more of your posts. I have a now-fourteen year old daughter who was diagnosed with infantile spasms when she was three months old. I'm currently trying to parse out all this stuff about IS, Quescor, insurance companies, etc. and can't make head nor tail of it. Suffice it to say that I'm completely revulsed by two things: Big Pharm and Big Insurance. I'm all for bringing attention to infantile spasms, though, and wonder how and what to post on my own blog. I'm on the board of the Epilepsy Foundation of Greater Los Angeles, and I don't think they even know about IS awareness week! Anyway, enough babbling. I look forward to reading more of your blog!

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  3. Being so far away, there isn't much I can do.

    But everything I could do online has been done.

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