 |
 |
Dear List Members, A short while ago there was discussion about an announcement that a meeting was planned in Miami to explore ways to empower PWPs to become more proactive and involved in the all-important quest of finding a cure for PD. A living/breathing agenda has now been created that has the promise of encompassing all our issues. Here is a glimpse of the Agenda for the Jan 15 - Jan 19 meeting (much of the following text is quoting/paraphrasing Bob Dolezal's Agenda): "Statement of Fact - Advocacy works. Clearly, the Udall Bill would not have been enacted by the U.S. Congress had it not been for concerted and directed advocacy by "People With Parkinson's" (PWPs)." "Purpose of the Miami meeting - ...to establish a "process" for INCREASING and IMPROVING grassroots participation of PWPs in the socio-political power structure that affects their daily lives. That power structure includes state legislatures and the United States Congress, the fifty governors and the president, the existing Parkinson's disease organizations, the medical community, the medical bureaucracy (viz. NIH) and the media." "Goal of the meeting - When this meeting adjourns, we should have established a road map of tasks that will enable a group of advocates (if for no other reason than to save time, this "Pro-tem Leadership Committee" should do it) to go to the Parkinson's community > to explain what we have done in Miami, >to present a preliminary agenda for the initial session of the PWP Congress, >to provide the method for involving PWPs in heretofore unheard of numbers." I urge the 1295 USA, 261 international, plus the 64 "concealed" subscribers of this list to participate in the design and development of this beginning effort to create a foundation that promises to serve all the PWPs to make a better life for ourselves and our loved ones TODAY! "There can be no clearer voice in a raging storm than that of one lost in its innards. Many voices can be even louder and clearer, if they cry out together, in harmony. What we accomplish or fail to accomplish in Miami will be a response to critics and supporters alike. It will cast the future of the PWP Congress, whatever name or form that may take, and will set the course for further and greater PWP involvement." All you have to do is to send an email message to me, [log in to unmask] and I will send you the more detailed Agenda, as created by Bob Dolezal, for your comments and additions. To respond to this offer, DO NOT HIT THE REPLY BUTTON- cut & paste my email address into the address line. Please respond immediately - silence is NOT golden! Margaret Tuchman [log in to unmask] Margaret Tuchman (56yrs, Dx 1980)- NJ-08540 [log in to unmask]