Please complete the FDA survey form that is available on Julie Flygare's website. The responses will be presented on September 24th, 2013...
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Posted 10 September 2013 - 10:26 PM
I'll be sure to fill this out tomorrow. I'm tired and also a tad buzzed from a hard root beer, lol. But I do want to help, even though my experiemce with narcolepsy seems pretty nonstandard.
Posted 10 September 2013 - 10:56 PM
info here -> http://www.unitenarcolepsy.org/
Tomorrow there's a webinar, there's one on Thursday the 19th, and there's been a few which are available on youtube (links within: http://www.unitenarc...get-involved/ )
The webinars are based on the upcoming FDA webinar on Tuesday Sep 24th, two weeks from today.
The point is, which the survey relates to directly, (copied from unitenarcolepsy.org) to:
"Participate in the Sept. 24, 2013 FDA Meeting in-person or via webcast. Don’t miss this golden opportunity to speak directly to key FDA decision makers about your experience. Registration closes Sept. 13, 2013 and space is limited."
Posted 11 September 2013 - 09:31 AM
Okay, I filled it out. Hopefully some good will come of all the FDA intervention. It's the government though, so I'm less than hopefully. It may sound evil to hope for this, but we need someone who's both rich and popular to get stricken with a particularly debilitating brand of Narcolepsy. Until that happens, there's not gonna be much interest in curing it, and the public at large will continue to think of a sleepy Mr. Bean.
Posted 11 September 2013 - 09:46 AM
I know I hate it when I'm rushing to a million dollars in a locker at a train station only to fall asleep standing within a few feet of it.
Basically, you're asking for a Christopher Reeves sitaution. Maybe we'll get lucky and Taylor Swift will start showing symptoms.