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08-15-2008, 02:11 PM | #1 | ||
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In Remembrance
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Where to begin? It's been a long time since I felt like I was really CHANGING ANYTHING. We stumbled into Amgen's bumbling phase II trial just at the same time as we were buildling the pipeline project to track things like that. Ended up in medical history.
Those of you who know me personally or from this forum, who know my story, also know that this wasn't the first time I happened to be in the right place at the right time. That's where i got my drive. Well, I have that feeling again. This is going to be unique and will change the way clinical trials are conducted. And, as Rick has always said - we have to do it ourselves. I am writing here now to ask each and everyone of you to look hard at yourself, and decide if you are up for being an online advocate. Then, can you please take an honest look at what you are good at. And make a decision about working on any of this. I can only hope and pray that the community will share info at their comfort level in any of the databases that we come up with. I am ecstatic [when is the last time any regulars on this forum have seen my outlook as "ecstatic"?] that John will provide multiple databases. I have emailed Todd Scherer who is Pres. of Research at FOX. I asked him and want to ask others what seems to me to be the obvious first question - what kind of information do researchers need? want? I made it clear that i was only asking for advice, not sponsorship. We are a patient group, but need collaboration with experts to succeed. I don't know if or when I will hear back from him -this question is a little bigger than the others I've asked....lol Ok more is better in this instance. Doc J isn't available immediately but there is a monkey hanging around here who has offered some help; so I want to keep the momentum going. forward paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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