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>The NIH is planning to host a PD consensus conference late this summer in >Washington, DC. All the Parkinson's organizations have been asked to >participate in this very important scientific event by the National Institute >on Neurological Disorders and Stroke (NINDS), the institute that funds most >PD research. This may be a good vehicle to achieve a coordinated effort since >all the relevant orgs will be together. We may be able to make this sort of a >summit of all PD orgs. >Any thoughts? >Larry Hoffheimer >NPF DEAR LARRY In response to your call for a summit of PD organizations I want to share a little anecdote. About 12 years ago- prior to my diagnosis with PD, I served on the Board of directors of our local neighborhood association. We have a community Health Fund Drive- where instead of people going door-to-door every several weeks for the "disease oof the week", we ask that residents make one large contribution dividing it as they see fit. That year it was brought up that they were not going to include PARKINSON'S DISEASE as one of the the charities because there were so many organizations they didn't know where to send the money. When I reflect on it now I am angered by the split and what it is doing to our cause. Inevitably, there must be substantial additional administrative costs as well as fragmentation of our efforts. Without knowing any of the politics involved, I must assume that there must be a lot of people who are putting their own personal interests above accomplishing the goals of education, research, and political action. What can we do? I suggest that we make it known to our organizations that we insist that they take part in such a conference and that if necessary mediation occur to bring the organizations together and that we who contribute and have influence on contributors make it clear that we intend to throw our full support behind whatever combined organization evolves.. What do people think of my idea? Does anybody have any other suggestions? If you think my idea is a good one, how can we implement it? And for you lawyers our there what are the risks? I'm interested in hearing how others feel about this issue. CHARLIE Charles T. Meyer Madison, WI [log in to unmask]