Paula,

You're the best. I avoided interjecting when you first asked Sheryl the status on this document. I had no idea that such a document existed, then I thought, wait- a patient's bill of rights drafted and shared by which PD organization? I checked the Pipeline to see if their Bill of Rights was somehow connected and at their site when hyperlinking received the Error 404 Page not found message. Isn't this telling?

Anyway, this brings to mind the usual number of questions:

- What organization is responsible for the DOR?
- Who wrote it?
- Furthermore, why aren't PWP represented by only one non-profit group?
-Why aren't patients encouraged by their neuros to participate in research; especially the highly desirable dopa naive patients?
-Why don't the major PD organizations publish and promote patient participation in research on their web sites, through brochures in doctor's offices, etc.

Until I joined this forum I had no idea that participation in PD research was so low. I felt cheated by my neuro, who conducts research; why didn't he suggest it when I was newly diagnosed stressing how there is a need for dopa naive participants. Instead, I was sent on my way with a heavy heart and a bag of pharmaceutical samples. I wouldn't have felt "ready" right away but being given the otion to participate would have empowered me, I'd have embraced it as giving me a chance to "fight".

There clearly needs to be an effort among the collective PD organizations and clinicians in educating newly initiated PWP on research. I suspect that doctors are reluctant to promote participation because then the stress is on the fact that our condition is incurable, when they would rather stress that it is treatable.

I think a large problem stems from having no one main PD advocacy group (instead we seem to have several competing interests)? Therefore, we have no clear, guiding voice advocating for us. How do we change this? I'd like to see the DOR as a part of a larger PWP or patient manifesto.

Thanks for seeing that this merits its own thread.

Laura