Fair enough, it's hard to know what's real in that world of celebrity. i think they confuse disease land with TV land sometimes. Patients are viewed as fans.

I wasn't aware of what you speak of about researchers not finishing. I don't know about any of the interactions between the staf - hierarchy, egos and such. You are thinking that researchers are taking advantage of MJFF and staff is more on ego trips and less concerrned about curing?

i have had cynicism about MJFF, but for different reasons, mostly concerning patient input. After the GDNF debacle, they started listening and actually brought us to New York to discuss it for a day. Since then, other issues that they are studying that patients have been loud about are sham surgery, substituting for GDNF with ceregene in a quick moving study, and now electronic records.

It is all about money. But they are private and can do what they wish. They may waste it, but they don't sit on it, as others orgs are rumored to do - saving for new buildings or what not.

MJFF personally isn't in a position to do much for the common patient. He started out relating that way, but has had it as long as I have - he was DX at 29 or 30 in 1991? I think. I get angry sometimes about how he says he is doing so well and everything in his life is so perfect. Teeth clench and one can't help thinking - would it kill you to answer this email -it's important!

But he understands like no one else and so does Andy Grove. if there is work to be done in the foundation, I would suspect Andy would speak up. After all, he has invested over #20 million and bequeathed $40 more million. He isn't going to tolerate incompetence. Andy Grove still thinks GDNF should be given another shot.

That's very encouraging. But will it happen in time? The magic question. My money is on MJFF because it is about money - they have it, and they have two patients whose lives are on the line. Another way to view would be - just think of where we'd be if Michael never got PD?

paula