Ceregene did not make its endpoints and the Cere 120 gene therapy trial was abruptly canceled. MJFF made a valiant effort to keep this trial moving quickly after the GDNF failure.

One of the areas in which many of us feel we should be involved in is the process and rationale of setting those endpoints. I was never as excited about neurturin as GDNF because i was told from the begnning by a researcher I trust that it wasn't as good as GDNF.

We know that some people are helped and some aren't - so how do you set endpoints? Doesn't the criteria need to be modified for certain subtypes? That's what collecting patient information is all about - finding subtypes, bio markers, what could work with one but not the other.

I think direct communication - questioning and answering - of patients is imperative in developing these subtypes. Lots of patients - not just the few they see in practice, if they even are in practice. They are in labs, with no contact with patients most of the time.

Are you aware that most of the Parkinson Udall centers do not have patient clinics? They don't see patients.

I'm not ungrateful for what MJFF does; I am tired of being left out of the process as one treatment after another FAILS. I'm tired period, but still forcing myself to try to come up with a way to contribute that might lead to a success.

i guess i just won't anymore. I'll just say thanks and let them do all the work.

paula