THE PARKINSON'S ALLIANCE: REPORT #1: AN OVERDUE UPDATE
This is the initial report of the "Parkinson's Alliance" - previously known
as the PWP Congress - since our formative four days in Miami.
The entire Miami episode would have taken a totally different tone, or
would not have occured, had the Udall bill not passed. We went to Miami to
build on the jubilation of that historic achievement - specifically, to
determine how best to move from Congressional authorization to
appropriations, with the involvement of the Parkinson's community.
Passage of Udall clearly announced that our community had done lots of
things right. Yet, we all knew that, to win full appropriations under
Udall, we were going to have to do better. For starters, we need to
correct the inter-organizational friction that too frequently caused
problems during the Udall campaign. Everyone - including the organizations
themselves - knows that, from time to time, their goals or approaches to
achieving goals have resulted in counter-productive inter-organizational
conflict. Too often the Parkinson's "community face" publicly crumbles, and
organizations created to help the Parkinson's community instead do it harm.
No one, it must be made clear, proposed the merger of the organizations -
only that they coordinate and cooperate in matters that intimately and
dramatically affect the lives of millions of Parkinsonians, families and
friends.
So, our purpose entering Miami, articulated in the pre-meeting agenda that
was published on the "listserv," was to develop a "process" to increase and
improve grassroots participation of PWPs in the Parkinson's power
structure, and to reduce, if not eliminate, the fraternal back-biting that
would diminish our chances for full funding under Udall.
It was also necessary to establish and explain, immediately, what the
Alliance would not be, to ensure that the Alliance not become another
competing organization attempting to draw up its own new agenda or usurp
the agenda of others. Making that emphatically clear to all would help
relieve tensions and open the door to greater discussion during our
post-Miami meetings.
In some ways, after Miami, we have fallen short - certainly we
should have been back to you sooner. But in others - including dealing
with inter-organizational problems - we have learned and achieved more than
any of us could have imagined.
THE ALLIANCE
Coming out of Miami, our initial goals were to foster inter-organizational
harmony, and get PWPs involved in Udall funding.
To encourage the construction of better bridges among the organizations
themselves, we sent teams to meet with each organization. Not
surprisingly, PAN and APDA voiced concern about the role of the Alliance.
Their concerns were addressed, inter-organizational cooperation was
discussed, and some progress was made. These were initial meetings, and
discussions were frank, candid and fulfilling.
The teams attempted to explain that the Alliance, instead of being another
competing organization, will instead be a "monitoring process" that
overlays the existing organizations, sometimes acting as a buffer,
sometimes as a catalyst, but always attempting to promote a common goal.
Clearly, intra-organizational matters are not the Alliance's business.
Rather, its focus is to be on the global picture, the inter-organizational
agenda to attack the disease that we all share. The Alliance's power will
emanate from the floodlight it shines on all activities, its independence
from organizational allegiance, and its ability to report objectively to
the total Parkinson's community.
NEXT
The initial global issue is full funding for the Udall bill, and the
monitoring process is already being applied to this effort. Meetings and
conference calls have been held among key people in each organization.
There have been glimpses of a growing commonality of purpose in creating
and carrying out a common agenda. Among the activities are the following:
1) A concerted effort to create "teams" to contact each member of
the 29 member House Appropriations Committee. Teams would include PWPs from
the members' district, politically savvy lobbyists, and where applicable, a
person with scientific expertise who also is from that district.
2) A challenge to NIH's figures for "direct" Parkinson's research
(NIH's numbers have grown astoundingly recently, even for the same period
of time!)
3) Serious work is underway to obtain private donations to fund
$20-25,000 "pilot seed programs" to prepare substantive grant applications
to flood NIH with worthy research funding proposals the day after the $100
million is appropriated. There will be no more excuses from the NIH that
there aren't enough worthwhile Paarkinson's project for it to fund.
CONCLUSION
The Alliance will continue to strive to increase the participation of PWPs
in policy making, replace inter-organizational secrecy and division with an
understanding of mutuality of interests, and to increase person to person
communication among the organizations. That was our role as expressed in
the "Vision Statement" adopted in Miami , and it fits comfortably now.
The Parkinson's Alliance, whose members are mostly members of and/or
contributors to one or more of the major Parkinson's organizations, is
uniquely positioned to dramatically alter counterproductive
inter-organizational disharmony and promote progress through unity.
Indeed, it is neither self-serving nor hyperbole to say that it already
has. The power of PWPs to effect change among the organizations that
represent us is not unlimited, but it is formidable.
We have made a good beginning.
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NOTES:
1) There were twelve advocates at the Miami meeting. Some were affiliated
with one or more Parkinson's organization.
2) The Parkinson's Alliance receives administrative support and funds from
The National Parkinson's Foundation.
3) The Alliance is and shall remain independent of any organization. No
organization exerts influence on the Alliance, except through the merit of
its message.
