Lloyd, I hope you have had a thorough visit to www.pdpipeline.org . The Pipeliners have done a lot of what you describe, and just this last week at the BIO conference helped spread the word about patient needs and views. Next stop is, I believe, the NPF YOPN meeting in Chicago (see www.parkinson.org), where they are doing one of the breakout sessions, as they did at PAN. Do I hear a round of applause? I can attest that Pipeliners is well known by doctors at the Udall Center I go to (and that they read what I send them about patient opinions on this forum).

You, too, can be a Pipeliner, and help track drugs in the pipeline from first awareness about them to FDA approval and beyond (see www.pdpipeline.org for how). There are a lot of Pipeliner jobs, for example, I do copy-editing and spiritual support, and I look for off-the-track stuff on the internet. Paula even mentioned me in the thread "GDNF clinical trial results": "... you are right about the tape, ...Jaye found it online and we sent it to 60 Minutes." That was really a thrill, seeing a piece of the evidence I found on 60 Minutes. We meet in a phone conference once a week and operate by consensus under the directorship of Perry Cohen.

Many PWPs from here have become leaders in the PAN (Parkinson's Action Network) organization, attending their forum each year and lobbying their members of Congress and Senators. At the state level, funding for stem cell research can often be credited to PWPs who testified and politicked even though they felt like lying down the whole time.

I see this board as being for personal support and information. For years, in addition to the wonderful tons of support I received, I did my primary advocacy of patient education here and hope I'll be able to return to that. I don't think I personally could get published in a peer review journal, but some of the publications aimed at patients accept articles, and it's a start. In that regard I'm starting to write and honing my skills (which I also use for church work) and learning to use my MacBook to best advantage, and hope to have a blog available by the end of the summer. What about a bunch of blogs all on the same website?

There is so much being done, I guess I don't understand why you (and Rick Everett) seem to want to start up something else. Feel free, of course, but why not join in the fun that's already going on? Have I misunderstood what you're asking?

Jaye