Bob.... With all due respect, after reading your report, it sounds to me like a MAJOR part of the Parkinson's Alliance is that of policing the OTHER main PD association to see that they cooperate and work WITH each other instead AGAINST each other. I'd like to believe I'm incorrect because that would be an incredible waste of the limited time, energy, AND talent AND resources of some devoted and wonderful persons with Parkinson's that COULD be better spent by them in behalf of the greater PD community. WE ... the Parkinson's Community, made up of individuals having the disease and/or their families and loved ones .... shouldn't feel FORCED to HAVE to police these organizations in order to get them to act in a mature and adult manner in an adult world! Sheeeeeesh! Barb Mallut [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of robert l dolezal Sent: Monday, May 04, 1998 10:44 PM To: Multiple recipients of list PARKINSN Subject: PARKINSON'S ALLIANCE: REPORT #1 THE PARKINSON'S ALLIANCE: REPORT #1: AN OVERDUE UPDATE This is the initial report of the "Parkinson's Alliance" - previously known as the PWP Congress - since our formative four days in Miami. The entire Miami episode would have taken a totally different tone, or would not have occured, had the Udall bill not passed. We went to Miami to build on the jubilation of that historic achievement - specifically, to determine how best to move from Congressional authorization to appropriations, with the involvement of the Parkinson's community. Passage of Udall clearly announced that our community had done lots of things right. Yet, we all knew that, to win full appropriations under Udall, we were going to have to do better. For starters, we need to correct the inter-organizational friction that too frequently caused problems during the Udall campaign. Everyone - including the organizations themselves - knows that, from time to time, their goals or approaches to achieving goals have resulted in counter-productive inter-organizational conflict. Too often the Parkinson's "community face" publicly crumbles, and organizations created to help the Parkinson's community instead do it harm. No one, it must be made clear, proposed the merger of the organizations - only that they coordinate and cooperate in matters that intimately and dramatically affect the lives of millions of Parkinsonians, families and friends. So, our purpose entering Miami, articulated in the pre-meeting agenda that was published on the "listserv," was to develop a "process" to increase and improve grassroots participation of PWPs in the Parkinson's power structure, and to reduce, if not eliminate, the fraternal back-biting that would diminish our chances for full funding under Udall. It was also necessary to establish and explain, immediately, what the Alliance would not be, to ensure that the Alliance not become another competing organization attempting to draw up its own new agenda or usurp the agenda of others. Making that emphatically clear to all would help relieve tensions and open the door to greater discussion during our post-Miami meetings. In some ways, after Miami, we have fallen short - certainly we should have been back to you sooner. But in others - including dealing with inter-organizational problems - we have learned and achieved more than any of us could have imagined. THE ALLIANCE Coming out of Miami, our initial goals were to foster inter-organizational harmony, and get PWPs involved in Udall funding. To encourage the construction of better bridges among the organizations themselves, we sent teams to meet with each organization. Not surprisingly, PAN and APDA voiced concern about the role of the Alliance. Their concerns were addressed, inter-organizational cooperation was discussed, and some progress was made. These were initial meetings, and discussions were frank, candid and fulfilling. The teams attempted to explain that the Alliance, instead of being another competing organization, will instead be a "monitoring process" that overlays the existing organizations, sometimes acting as a buffer, sometimes as a catalyst, but always attempting to promote a common goal. Clearly, intra-organizational matters are not the Alliance's business. Rather, its focus is to be on the global picture, the inter-organizational agenda to attack the disease that we all share. The Alliance's power will emanate from the floodlight it shines on all activities, its independence from organizational allegiance, and its ability to report objectively to the total Parkinson's community. NEXT The initial global issue is full funding for the Udall bill, and the monitoring process is already being applied to this effort. Meetings and conference calls have been held among key people in each organization. There have been glimpses of a growing commonality of purpose in creating and carrying out a common agenda. Among the activities are the following: 1) A concerted effort to create "teams" to contact each member of the 29 member House Appropriations Committee. Teams would include PWPs from the members' district, politically savvy lobbyists, and where applicable, a person with scientific expertise who also is from that district. 2) A challenge to NIH's figures for "direct" Parkinson's research (NIH's numbers have grown astoundingly recently, even for the same period of time!) 3) Serious work is underway to obtain private donations to fund $20-25,000 "pilot seed programs" to prepare substantive grant applications to flood NIH with worthy research funding proposals the day after the $100 million is appropriated. There will be no more excuses from the NIH that there aren't enough worthwhile Paarkinson's project for it to fund. CONCLUSION The Alliance will continue to strive to increase the participation of PWPs in policy making, replace inter-organizational secrecy and division with an understanding of mutuality of interests, and to increase person to person communication among the organizations. That was our role as expressed in the "Vision Statement" adopted in Miami , and it fits comfortably now. The Parkinson's Alliance, whose members are mostly members of and/or contributors to one or more of the major Parkinson's organizations, is uniquely positioned to dramatically alter counterproductive inter-organizational disharmony and promote progress through unity. Indeed, it is neither self-serving nor hyperbole to say that it already has. The power of PWPs to effect change among the organizations that represent us is not unlimited, but it is formidable. We have made a good beginning. ************ NOTES: 1) There were twelve advocates at the Miami meeting. Some were affiliated with one or more Parkinson's organization. 2) The Parkinson's Alliance receives administrative support and funds from The National Parkinson's Foundation. 3) The Alliance is and shall remain independent of any organization. No organization exerts influence on the Alliance, except through the merit of its message.