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

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.