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Preface What I'm about to do is tell you exactly what my thoughts are, something that none of the savvy politicians I've met recently would ever consider. I'm doing this because I look at this list as a kind of extended family and as such you deserve to know. I apologize for withholding information from you, but other than just giving you a glimpse of what has transpired I will not engage in muck raking as it serves no useful purpose. I will not point fingers at individuals or groups except to say all played a role. We have accomplished much, but there is more to do. We perhaps have a little time to catch our breath before we continue and I'll use this pause to clear the air a bit. I hope that nothing I say is destructive to our community or cause. It is not meant to be. I believe that the reason I have maintained at least a reasonable relationship with all those in the various Parkinson's organizations, despite some differences of opinions, is that when you deal with me I put all the cards on the table. I'd like to think I've earned what respect I have, take credit for very little individually, accept accolades graciously and work diligently to find a cure. I hope this answers many questions re the proposed Parkinson's Patient Congress. It is not a perfect plan. Given the people and organizations we have to deal with it is the best I could come up with. Its not a finished plan, but it has been given considerable thought and I do not envision change in the basic tenants without compelling reasons. I have asked some of the most respected of my fellow advocates to join me in finalizing and implementing the plan. I have prepared a list of FAQs(frequently asked questions) which I will post and add to it as appropriate. Anyone with a question is encouraged to ask. A survey is a good idea, but only after the issues have been thoroughly discussed. I believe we have accomplished the impossible, but we can do more, we can do better, some change is needed. Curing Parkinson's quickly (in time for me and you) requires the best we're capable of. You must demand that we get it. I believe this Parkinson's Patient Congress provides the best opportunity for us make our will known. When I speak of Unity in the Parkinson's organizations, what I mean is a united front(coalition) with respect to legislation like the Udall Bill. I do not care how many Parkinson's organizations there are as long as they are effective. Jim ****************************************** UNITY OF COURSE I made a mistake, not that I have not made many, but I have made one with respect to asking for the support of PWP for a Parkinson's Patients Congress without sharing with you some of the background I've experienced in the trenches. Of course you'd opt for unity first. I did. I believe no one has worked longer and harder to form an effective coalition than I have over the last 18 months. But for the sake of outward appearance, particularly to the House and Senate, I/we have tried not to publicize our internal brawls. Without airing too much of our dirty linen in public, let me share with this list a glimpse of what I have observed first hand. I will not access blame except to say it takes two to tango in this case three. 1) At the end of 1996 Congressional session we came tantalizing close to passing the Udall Bill. The DC representatives of PAN, APDA, and NPF were not speaking to one another and hadn't been for a month. 2) A group of advocates finally brought the parties together and thought we had formed a coalition of these three groups. It fell apart when they could not agree on letterhead. 3) On the day the president signed the bill into law the internal bickering reached new heights over who got invited to the White House. This is but a glimpse of the horse pucky that has gone on. It is with great reluctance that I bring this to light when we all should be celebrating our greatest victory. But of course you want unity. I want unity. I, and many others, have expended enormous time and energy trying to maintain the charade of unity. I for one am tired of expending my precious time and energy in the fruitless pursuit of unity. I busted my butt to achieve unity and if you don't see my bloody brow from trying too achieve it, of course you will opt first for unity. I am not a negative person. For me the glass is always half full. **************I THOUGHT WE COULD PASS THE UDALL BILL. ********************* I still believe we can have unity, but the glass that sees these organizations doing it simply because it is in the best interest of curing Parkinson's, for me is empty. Please spare yourself the walk in my shoes, its not a pretty journey. I do invite you to join me for a walk along the high road. A road that is devoid of Parkinson's politics. I believe there are to ways that the Parkinson's community will see unity: 1) PWP will band together and demand it (i.e. the Parkinson's Patience Congress); or 2) One organization will grow and become dominant I have Parkinson's. As a matter of fact I've just had some difficulty changing agonists and was going 2 hours on and 2 off. That brief glimpse of the horrors that loom for me if we don't find a cure soon, scares the hell out of me. That makes me impatient. The clock is ticking for us with PD. I want to pursue both points 1 and 2 above at once. In fact, I want to pursue three at once, the third being working within NPF to make it an even better organization. Could I more effectively concentrate on only one and if it failed turn to another. Yes, if I had the time, but Parkinson's has robbed me of that commodity. That is why we're meeting in Miami. I'm a board member of NPF. I am proud of their facilities and was looking for an opportunity to show it to my friends and fellow advocates. If one organization is to become dominant, I believe it will be NPF. Does that mean I'm working against the others? Absolutely not. Is NPF responsible in part for the lack of unity I cited? I hold them all responsible. I choose to accept NPF's offer to join their board because I felt: 1) they were emerging as the premier organization 2) I could work within NPF to effect change. With respect to NPF's announcement, my style is to let my actions speak for me and not do the flag waving and horn blowing that all three organizations participate in to some degree. With that in mind, what follows is a near replica of Melinda Brown's announcement but with the words NPF deleted. If this version is more appealing, I suggest the difference is style not substance. ********************************************** Establishment of a Parkinson Patient Congress The contribution of the grassroots Parkinson's community in passing the Udall Bill is well recognized. This previously untapped resource should have a greater voice in establishing a national Parkinson's agenda. Therefore, it is with pleasure that I announce, the establishment of the "Parkinson Patient Congress". Involvement in setting the agenda for Parkinson's disease will further increase grass roots commitment. Providing such vehicle for PWP's to give their input will further empower the grassroots resource. The Parkinson's Patients Congress will meet annually in Washington, DC. This annual meeting will be open to anyone with a Parkinson's connection regardless of affiliation. The intent is for PWP (people with Parkinson's) to participate as individuals not representatives of any specific Parkinson's organization. This Congress will answer the question "Who speaks for the Parkinson's community". Anyone who has Parkinson's disease or those with loved ones with Parkinson's disease are encouraged to participate. In addition to establishing a national agenda by PWP this group will elect a leadership committee to represent their interests. The Committee will have as its principal functions representing the congress and the distillation of input from the Parkinson's community into an agenda for the annual meeting. These "positions" for advocacy will form the Patient Congress public policy agenda. These issues may form the basis of federal legislation and regulation. The Congress will work closely with other Parkinson's organizations when appropriate. The Congress will be administered from Washington, DC, by Larry Hoffheimer and Bill Turenne. In preparation for the initial meeting of the Congress the initial Leadership Committee has been organized which Jim Cordy has agreed to chair. This committee will meet in early January. Joining Jim are: Carol Walton, Lupe McCann, Bob Dolezal, Bob Martone, Charlie Richards, Dale Severence, Margaret Tuchman, Perry Cohen, Peter Morabito, Dave Engels and Terri Whitling. No stone will be left unturned in the quest for a cure for Parkinson's disease. This Congress will seek to develop a synergy between the Congress and the Parkinson's research centers. The Congresses goal is to provide effective leadership to the Parkinson's community wherever it is needed and welcomes you to join with them in finding a cure for Parkinson's disease. This must be first and foremost on everyone's agenda. Keep abreast of developments by subscribing to our outstanding newsletter, The Parkinson's Report, which is disseminated to nearly 200,000 persons and/or visiting our Homepage at http://www.parkinson.org. The initial Congress meeting will be in Washington in the Spring of 1998. Some financial assistance will be available for travel expenses. If you are interested in participating in this bold new initiative, either by attending the Congress or suggesting issues you feel the need to be addressed, please contact the our Washington Office by phone, in writing, or by email. Washington Office 1250 24th Street, NW, Suite 300 Washington, DC 20037 (888) 331-4673 email: [log in to unmask] [log in to unmask] Jim Cordy Pittsburgh [log in to unmask]