I Fully support Perry's statement. We should ask all organizations for co-sponsorship and if they refuse then proceed without them. The leadership committee meeting should not be delayed and while I would prefer it be held in a neutral site as long as any one organization (read NPF) does not exercise undue influence, I would support Miami. Charlie Perry D. Cohen wrote: > > In response to the recent posting by Jim Cordy on the Parkinson's Patient > Congress and in concert with the thoughtful and articulate postings of > Charlie Meyer, Ron Barbar, Dolores Gross and Elliott Haynes I want to weigh > in on the issue of Coordination, Coalitions and Unity. > > As always I respect Jim's candor and his ability to listen and > synthesize > input from others. I know he and I have the same goals and motivation, and > > I know he and others are rightly impatient, but I differ on tactics mainly > because > I have a different view of what happened in the past and what is needed for > coordination. I feel confident in my view which is derived from my PhD in > Organization Behavior and 25 years working with interorganization > coalitions > as well as my firsthand experience working with coordination and coalition > efforts for the PD national policy agenda. I have been involved with Jim > every > step of the way. I only point out this background to underline that my > position is > well informed. > > I prefer to use the term "coordination" to describe the workings of the > steering committee rather than UNITY by Jim's definition. Neither he nor I > seek to > reorganize the current structure of the National organizations, no matter > how > desirable that would be. We do seek cooperation on common public policy > goals > for the PD community, such as appropriating $100 million for research > authorized > by the Udall Act. Unity here would be great and it is a goal, but all we > need is enough > "coordination" 1) to give an appearance of unity to the outside and 2) to > more > efficiently prioritize and allocate our limited resources. > > In spite of the fact that the national organizations couldnt agree on > letterhead and > they dont really want to coordinate much less be unified, THE STEERING > COMMITTEE WAS SUCCESSFUL, and it made a significant contribution to our > success on the Udall bill. I would speculate that if the Steering > Committee didnt > force coordination on the organizations we would not have passed the Udall > bill. > Whether this is right or wrong, the point is the groups dont have to like > to work > together, and they dont need a single letterhead or unity. They may need > to be > forced, but they MUST coordinate minimally. When I see the unity cup a > third full, > I call that success and Jim was the major force behind the success (that's > why he's > called the general, but as general it is necessary to lead the troops > FORWARD). > Maybe we'll never get the glass to even half full but we cannot afford to > go back > toward empty where we started. > > I believe the patient congress should be a force toward unity not away from > it. As an NPF exclusive, I believe no matter what the other merits, it > works > against unity and makes it harder to coordinate, and therefore it will be > detrimental. If and when NPF becomes dominant then create an NPF > congress, but for now I see an NPF as one of three, all of which are needed > to > accomplish mutual goals for the PD community. > > Recent misunderstandings and disagreements have drained the cup from a > third full to maybe half that or less. This is a damaging set back when we > > need to be going after appropriations. I favor the first of Jim's two ways > > to achieve coordination and movement toward unity: > 1) PWP band together and demand it [i.e. the Parkinson's Patience > Congress with all the national public policy organizations as > sponsors. > (or publically refusing to sponsor it). Otherwise, its a force > against unity.] > 2) One organization grows and become dominant. This may achieve unity > in the long run but now we need resources from all three > organizations. > Yes, to me Jim's hypothetic announcement of the Patient congress without > the NPF > emphasis and with a neutral administrator says what is truly needed. > > I think that we delegates must insist on publicly inviting the others to > cosponsor the congress. If PAN and APDA dont accept, NPF has not > only been community minded, but the others have been too short sighted > to recognize the importance of the grass roots leaders in our community's > new found political muscle. Under these circumstances NPF is strengthened > & I will fully support this. If the others do accept, the community wins > by > having one vehicle for at least minimal coordination (which is essential to > > maintain our position of strength in the appropriations battles). they > will > not have to put up as much resources if the others chip in. As long as > NPF doesn't back out they win both ways by working FOR THE PD > COMMUNITY. {as an aside, notice now all three groups are posting > e-mail that looks like they are in charge? What's going to happen when > the troops get 3 sets of marching orders, and isn't it a waste of > contributers' > money to have three separate commanders} > > Locally in the National Captial Area, Susan Hamberger and I have initiated > planning for a jointly sponsored "party" (with APDA, NPF, maybe PAN) to > celebrate the Udall bill enactment -- a demonstration that we can (and > MUST) work together. > > Perry Cohen, Washington DC -- CHARLES T. MEYER, M.D. Middleton, WI [log in to unmask]