Jackie / Jean - thanks for your energy!

I'm thinking out loud here, but wondering if some of the initial work you propose, Jackie - individual answers to the 5 questions - be done online and at home by as many people who want to get involved. We all have a stake. Answers to the questions can be submitted to a central location (perhaps the Yahoo group address) to be compiled.

At that, or some point, I agree, a face to face meeting is required to figure out how to take the raw material and turn it into a game plan. But perhaps the data collection can draw from a wider audience. This doesn't have to be "scientific", just a "sense of the community." Afterall, a meeting of several patient advocates with a facilitator is far from scientific - and that is how all of the work gets done now.

Determining the goal is essential. Personally, I'd like it to be more than just a declaration of intent, but also include a concrete outcome: 1. PD Community should organize more efficiently in order to accelerate a cure and expand quality of care. 2. Patients have the biggest stake in making sure (1) happens; one way is to establish an oversight/action committee comprised of patients and org representatives. Or something like that.

I have established a yahoo group to talk about this stuff, united4pd. Right now I have it set up as invitation only. If you would like to join, PM me with your email address. We can decide later if we want to go ahead and make it public.

My initial thoughts. What are everyone elses'???