Don Perry,

I'm with you all of the way until this last statement in your next to last paragraph "PPP is therefore trying to maintain close affiliation with PDF and still retain independence."

As noble an effort as that may be, it is a fundamentally and fatally flawed proposition. (Read all that has come before in this thread.) Due to the very nature of any non-profit organization, the organization is beholden to their board and donors first, their client base second.

A truly independent patient voice will always be at odds with any one and/or all of the Parkinson's organizations.

This is a neutral statement, a natural situation - it just defines the environment in which we are laboring.

It's taken years of these kinds of battles to finally get it knocked through my head. The orgs have been very responsive to patient requests for a greater voice within their structures of decision making. This is why board positions, advisory councils, and committee and leadership memberships have been created for patients over the last few years. They are making places for us within their organizations.

Our failures have come when we push for something that is not organizationally in their best interests. Your PPP struggles with PDF and others' with PAN regarding national leadership come to mind. Although fought with spirit and integrity, they were battles bound to lose because they didn't fit structurally; it's like trying to change organizational DNA.

Seems like we should continue to work with the orgs as the allies that they are, while figuring out a way for the patients to influence our own futures with an independent voice. It should enhance, not supplant, the current situation.

This is a different task than finding more unity among the organizations. That is something that should occur whether or not we patients find our own way.

I think Tom's suggestion of a database is a great way to start building a patient network. If we use a common, simple program, like excel, that everyone has on their computers and is world wide (or one of the new online google programs - whatever!), then we won't have the trouble of stopping and starting over. And it is free. I don't think we need a budget for travel. If we think we need money up front, we'll never start anything.

I'm tired of fighting against the organizations. We need to figure out an independent way that allows us to work together.