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03-17-2012, 09:58 AM | #1 | |||
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I'd like to hear fro m the Neurologix trial participants about this.
As for me, it happened to me again ... I signed up for PostCEPT (the follow on to Precept) and PostCEPT was cancelled and they never informed the participants. I happened to read an online newsletter that the PSG sends out that there was trouble getting funding for PostCEPT, and it might not continue. Since I never got a phone call from my study center to come for my yearly visit -- nor did the Parkinsons Study Group send me a letter or notification of any kind (nor did I receive their newsletter) -- i have concluded the study was cancelled due to lack of funding. DID THEY INFORM THE TRIAL PARTICIPANTS IN ANY WAY? NO Another outrage. jean Last edited by jeanb; 03-17-2012 at 10:56 AM. Reason: spelling error - POSTCEPT needed ending T |
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03-19-2012, 09:18 PM | #2 | |||
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Where are our myriad non-profits? Why is it that their main concern seems to be monies for research? Until we become a squeaky wheel, this will go on forever. We are treated this way because we allow it, plain and simple. Maybe it's PD apathy, and that plays a part I am sure...but still we are fighting for our lives, so I don't get why we can't bring ourselves to (tactfully) challenge the status quo.
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"Thanks for this!" says: | lindylanka (03-24-2012), violet green (03-20-2012) |
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