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LISTFRIENDS AND LEADERSHIP COMMITTEE. Over the past year or two on the list, I have expressed my concern about fragmentation of effort between the numerous PD organizations. It had been my hope that following the passage of Udall the organizations which had cooperated during the lobbying effort would finally start working with each other and end the petty, juvenile bickering which has impeded our effectiveness for years. Melinda Brown's announcement of the NPF Parkinson's Congress appears to me to be a textbook study on how to perpetuate hard feelings and rancor. I may be wrong and hope I am overreacting but there is a lot at stake and I wanted to bring the issue to the list for discussion. When Jim Cordy told me about his idea for starting another group of primarily PWP and their caregivers several months ago my reaction was that we needed another group like "a hole in the head" (poor choice if similes). Jim in his characteristic way of building from a good idea scrapped the idea of a new group and came up with the Idea of a Patients Congress which would be "nondenominational". We would meet not as PAN members, APDA members, or NPF members. we would meet as PWP and our caregivers setting an agenda for political action, educating ourselves about our illness, relating to the professionals in movement disorders treatment and generally setting priorities from the consumer standpoint. People could then take the ideas back to their local or "sectarian" organizations and be energized to carry them out. This would not take authority or autonomy away from the existing organizations but would provide a common meeting ground and common goals which just might make the sectarian divisions less important. I also liked Jim's selection of the 12 person steering committee, many of whom I know from this list and it appeared from Jim's description of them that they had a variety of allegiances. Then the announcement came out about the NPF Patients Congress & the steering committee meeting in MIami. This apparently was the price NPF Charged for their funding of the Congress. I am concerned that the acceptance of this offer severely undermines the original intent of the Congress- unless one makes the assumption that NPF is the only viable organization and ignoring the others will have minimal effect. If the 12 person leadership committee do not feel that they are being co-opted and reaction here is not negative then Jim is right and we ought to move on and I'll see you all in Washington after the steering committee meets in Miami in January. But if there is significant divisiveness triggered by this plan then I would like to propose that the January meeting be held on neutral ground and other sources of funding be explored- such as contributions from the existing organizations or possibly solicit money from the drug companies who make our meds. I do not question Jim's motives but I do question the effectiveness of his plan given all the hard feelings between the various organizations. I would hope this will stimulate significant discussion. I think it needs to be thought out carefully and discussed prior to any meetings. Charlie 608-833-9336 FAX 608-833-9114 -- CHARLES T. MEYER, M.D. Middleton, WI [log in to unmask]