Anne - I started to reply in detail to your wonderfully thorough and thought-provoking entry, but it is much too late on the West Coast of the US to do it justice!

So, I'll just say for now that you have stated powerfully many of the issues that lie at the heart of PD research, researchers, and state of care. You've described clearly many of the things that are on my mind, and that are of such concern to all of us.

Plus, you have highlighted the true international nature of this venture, our audience, and the details we have to keep in mind as we go forward in order to make our vision reality. It's easy to say we're global; what does that really mean in terms of an official, legal organization? I want it to be international; your post is the best evidence of why: although we struggle as US PWP with federal agencies and organizations, as members of the international community of PWP our concerns as patients easily cross borders.

I was especially taken with your following comment, and think it deserves a lot of thought (as does all of your comments):

"In order to avoid harsh desillusion, to have legitimacy recognized and to reach our goals and change our future, we must talk about and work upon the reasons, ‘how and why’ PwP’s have been asked far too merely to give their own contribution to collaborative works this, at a worldwide extended scale."

Thank you so much for your contribution - I hope it won't be the last! We (I) have a lot to learn about PD in the rest of the world; I am humbled.