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
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