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Awesome thoughts and clear, well-thought-out message, Bob! THANKS! Barb Mallut [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of MR ROBERT A MARTONE Sent: Saturday, November 29, 1997 9:40 PM To: Multiple recipients of list PARKINSN Subject: Patient Congress - Unity Part II of II -- [ From: Bob Martone * EMC.Ver #2.5.3 ] -- I offered the Thrila in Manila rerun and the John Mc Cain sponsorship story to show that despite a variety of opinions on just about everything that we did in Washington and despite the absence of much inherant cooperation the job got done. Could it have been done better. You bet! Did many people get bruised ego's, figurative slaps in the face , character assassinations and more? Yep! Were these assaults appropriate? Sometimes yes and sometimes no. Could many of them have been avoided? Yes!!! You ask how? I believe one answer would be UNITY. Is that the right answer or the only answer? Surely not. We still run this country with democrats and republicans. Some would argue that that system doesn't work very well either but as some wise man said, Democracy has to be the worst form of government known to man. But I don't know a better one. Now in 1998 all the PD organizations are and should be showing increased strength and enthusiasm. We are very fortunate to have healthy PD organizations. It is unfortunate that the renewed strength and commitment does not necessarily lend itself to togetherness. In a lot of ways it may mean just keep getting better at what each already does well . I for one would not want to see any of these groups hurt by withholding funds. If some one wants to start a Unity fund, I suppose a case could be built to try it. However I would not want it to prevent the good work that each organization does, despite their sometimes controversial methods. Now on to the Congress and how I feel about it. I don't feel great about it at this point. I do believe it has the potential of derailing some of the great work that PAN has done and continues to do. Will I work to prevent that? absolutely!! I hope the APDA, NPF, PAN, PDF, PI, UPF and PAN will evaluate the work product of the congress and do the right thing based on their evaluation. What will the congress do for me? Speaking as an individual who has been active for three years in trying to make a difference, I have felt a need to be more involved in the overall strategic direction. I played the role of a foot soldier to the best of my ability. That was one of the things that was needed and that was what I did. But clearly as the movement got larger and more and more soldiers joined the ranks, we could have used a better structure. A dead soldier is a hero but of little value in taking the next objective. A victorious soldier is also a hero but also has little value if he doesn't know what the next objective is. In fact he can probably do as much harm (friendly fire casualties) as good if he is not careful. I believe the series of swift victories in the last two years created a void that contributed to what looked like disunity. Certainly that was a better problem to have than having to organize a burial detail. This war is not over soldiers! We need to get a new battle plan put together and see if the allies can improve on that plan as it moves forward. I believe I can contribute to that plan and that is why I have volunteered . Will the congress be unduly impacted by the NPF's financial support, the meeting in Miami and Jim Cordy an NPF board member leading it initially? First of all they are not offering enough funding to make this a clear winner. I see the offering as seed money to something that might become a winner. With additional support from the other groups in the form of funding and support for an agenda it could become a very powerful arm of the PD community. Can or will the inputs of the participants be bought or influenced by the NPF funding. I can only speak for myself. I will strive to seek out the facts and truths that I believe will help us find the cure as fast as advocacy, money and research can achieve. My bias will always be to actions that will generate quantum quality of life improvements for those afflicted. My wife is running out of time and treatment options. I have seen what that means and I will do everything in my power to prevent that from happening to her. Could that result in some short sighted thinking on my part? Yep! Will NPF be able to change that? I don't think so. Could a congress of 12 respected PD or related to PD individuals change that? I guess only time will tell. How will PAN and the others respond and will this create an even bigger divide? It could if we/they let it. Do the members want to see that divide happen? This member absolutely does not. Each of the other members will have to address that in due course as will each of the other PD organizations. Will the other organizations fight back? Why don't we ask them, Robin Elliot (PDF) fired the first salvo, I thought it was appropriate and expressed some of the concerns very well. If the 1998 track record of the congress shows disregard for any of the well thought out views of any of the major organizations and vice versus , I believe the congress will fail and die a natural death. On the other hand if we all show respect for each others views and work with a conciliatory attitude that seeks to find common ground rather than dwelling on differences and past screw ups, unity may actually be achievable. The congress should be scrutinized by the PD community. It is there to serve that community not to hurt it. If it fails in providing that service it should be disbanded. I see this as nothing more than a trial balloon with a short thick tether on it. Lets let the balloon get off the ground and see what it can accomplish. Public and private comments are requested. Respectfully submitted, Bob Martone