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
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Jim Cordy
Pittsburgh
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