Fiona,

you have no idea how much encouragemet i can squeeze out of the support expressed in this thread.. i don't consider you naive, but i want to give you the most current information possible before you go chain yourself to a fence. lol

We took out a full page ad in their[Amgen's] hometown a few yrs back....please continue to speak out! The people in this gene therapy[Federoff et al] trial appear to be trustworthy and have excellent experience and backgrounds, some going all the way to pre-amgen gdnf ownership. He just started a company, i was hoping he would be at BIO. I think this is information you should know.

i've heard so many back and forth rumors about Amgen and GDNF, who knows what is going on for sure. But i could make the mistake of getting a DBS, with this GDNF trial right around ]the corner. That's an area where secrecy [ideas are stolen] and not including patients in research meetings is doing the patients a disservice. Why are clinical trials not posted in all doctors offices?

The pD community needs more voices badly..there are many ways to learn the facts. OR nothing will change. And we are all just trying to do what is right.

can anyone answer this? who is doing something to make our lives more comfortable right now? that was the patient rationale throughout the amgen deal - stop and treat - we are suffering and shouldn't be forced to wait for a cure. give us what you have. no, not enough profit, not the right decision for business.

the orgs didn't get us that treatment. so who is responsbile for keeping us safe and for improving our lives?

keep talking fiona, naive doesn't fit anywhere into my impressions of you.


paula