Does anyone know if PAN or APDA have expressed any interest in
tri-sponsoring the PWPC?  I have heard nothing and read nothing from either
that would indicate an interest.

But let's say they both do want to, and would toss in some money for a
neutral site (neutral for whom?), when do you think it would occur?  This
century?

But let's say all the logistics could be worked out to the mutual
satisfaction of Joan, Larry and Paul Smedberg (or whomever these
organizations might send - oh, yes, how about the other organizations?),
and a moderator acceptable to all is in the chair, how long would the
moderator survive, and what would the delegates do for the remaining three
or four days after the moderator walks/is carried out?

But let's say the moderator survives, the discussion begins, and the
delegates attempt to stick to an agenda  prepared in advance and approved
by all three organizations.  (Get that - prepared and approved by all
three?)  Paul speaks first (A in APDA), Larry second,  and Joan speaks
last.  Each gives his/her interpretation of where the PWPC should be going.
The delegates listen intently.  And listen.  And listen ...

But let's say the delegates actually have a chance to talk among
themselves, with all three organization reps still there - how long will
the delegate discussion survive without inter-organizational bickering?
What happens when a course is suggested by a delegate that meets with the
approval of, say, one organization but not the other two?  Do you think the
two organizations' reps will sit there quietly in rapt interest, just
taking notes?   How long before the agenda - agendaS -  become the whipping
boy of the three organizations, and becomes so muddled, so
inter-organizationally hung-up, that the whole show falls apart, all three
sonsors walk away, and the dream of a PWPC disappears in the Fargo-Morehead
mist (Fargo-Morehead was the one site all could agree on).

Perry, all fellow delegates, all readers, all concerned People With
Parkinson's, all of you good people with vested interest in this patient
participation experiment working, please give this some more thought.
Consider:  First, there isn't a delegate among  us who is in bed with NPF
or any other organization.  Second, no one from NPF, no one, is going to
tell us what to discuss, what arguments to make, what conclusions to reach.
Third, a meeting of delegates with the least political influence possible
serves all our interest - it allows US to debate and discuss, and conclude
and recommend.  Fourth, tri-sponsorship will create an
organizational/functional quagmire heretofore undiscussed, and really too
much to talk aabout here.  Fifth, if what we can work out, without the
rancor and rantings that a tri-sponsorship would create, is good, if it is
a reasonable  start toward forming a viable PWPC, then no other letters
will be attached - PWPC, that is People With Parkinson's Congress - allying
it with any organization.

The  political chicanery, individual hostilities and petty
inter-organizational feuding that went on during the final days of the
Udall bill approval left a few people in important places wondering about
our leadership.  NPF is offering us an opportunity to come together to form
a new vehicle to carry us and our story into the next century.  No one else
has made a similar offer, and it is to NPF's credit that they have.

But that doesn't mean NPF is writing the report.  After the welcoming
remarks, I expect little input from NPF.  That is as it should be.  The
vehicle we assemble will bear no nameplate of current organizations, nor
will it carry their passengers or cargo.  It cannot, if it is to be
credible.  It will be, if it is to be, a PWP creation, for and by PWPs.

So let us not allow the arguments of others to divide us.  Let us get on
with it, do our best, and be entirely open with those whose lives, like
ours, may depend on  how we perform.  It is an opportunity we should not
lose.

                        Bob Dolezal



At 1:44 PM 12/1/97, 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