The following message is from Perry Cohen, a PWP who has been off the List
for a while.  He has still been following our political discussions, which
I've been forwarding to him and to other very-busy friends,just to save
them a little time so they won't have to search in the archive.

[log in to unmask]
_______________________________________________________________

From: [log in to unmask]


I have not subscribed to the listserve for some time now (My rusty brain
couldnt handel the volume.).

Rather be Too too long I am going to write two messages.  This message has to
do with progress our community is making in our efforts to expedite research
toward finding a cure now that the Udall bill has been passed and the first
post Udall appropriations have been enacted.  My location in Washington and
my professional career as a health management consultant including a
substantial amount of work with the NIH point me in the direction of building
a positive LIAISON with NINDS (Neurology Institute) as a major focus of my
contribution to the cause.  Other efforts such as raising seed grant money
are also important.

My second message will address the question of coordination (not unity) among
Parkinson's organizations which I notice is on the table again.  The issue of
organizational coalitions and interorganizational coordination has been a
constant theme of my professional career starting with my Doctural
Dissertation in Organization Behavior, and most recently with PD
organizations in the liaison role described above.  A key element of the
liaison effort described here has been the coordination of ALL the major
national PD organizations in the activities  While the individual PD
organizations all have contacts with NINDS, the liaison activities here are
the only linkages with NINDS that provide a COLLECTIVE voice (ie more than
one organization) for the PD community.  This alone could have enormous value
because a collective voice carries more weight than the sum of individual
voices.  The second message is harder message to write (because the process
is not necessarily pretty and certainly not without challenges), but I hope
to be able to contribute to the discussion soon.

What follows is a summary of points covered in meetings with NIH officials
and the actions that have followed.
------------------------------

LIAISON WITH NIH

Summary of Liaison Meetings:

On March 8th and 9th, meetings of interest to the PD community took place at
NIH.   On Monday, March 8th, a substantive meeting took place at NINDS with
the Director, Dr Gerald Fischbach, and the Communications Director, Marian
Emr.  This was in preparation for  Tuesday, March 9th ,  when
representatives from PD organizations and PWPs met with the NIH Director, Dr.
 Harold Varmus, and the Directors of Institutes heavily engaged in PD
Research -- National Institute of Neurological Disease and Stroke (NINDS--Dr.
Gerald Fischbach) and National Institute on Aging (NIA--Dr. Richard Hodes).
The purpose of the meeting was to initiate a dialogue with NIH officials on
ways that PD organizations can assist the NIH in implementing the Udall Act
and ultimately in expediting discoveries that result in cures for PD (i.e.,
treatments that reverse symptoms). Major national PD organizations --
including NPF, APDA, PDF, PAN -- participated in the discussions preceding
the meetings.  Expected participants from the Parkinson's Community were Mr.
Larry Hoffheimer, Mr. William Turenne, Mr. Paul Smedberg, Ms. Joan Samuelson,
Mr. Michael Claeys, Mr. Clarence Kipps, Ms. Kathleen Kenety, and Dr. Perry
Cohen.  Due to inclement weather, when Washington was hit by a major
snowstorm, not everyone was able to attend the  Tuesday meeting, but  the
preliminary meeting and  prior discussions to plan the meeting had already
attained the objective of initiating a constructive dialogue.

As a result of this dialogue with the Director of NIH and other NIH officials
responsible for research policy on PD,  a positive tone was established.   A
number of ideas were discussed to help expedite research toward a cure for
PD.  Follow-up of the meetings  will be primarily through the lead agency for
PD research, NINDS.  Key contacts are the NINDS Director, Dr.  Gerald
Fischbach and the Communications Director, Marian Emr.  Based on these
meetings, subsequent discussions with Ms. Emr, and a meeting of PD
representatives, the following items are activities that PD organizations and
NINDS intend to pursue individually and collectively.

** Coordination of PD activities across Institutes at the NIH.

NINDS takes responsibility to review status of Parkinson's Coordinating
Council and initiate action to make this council more active and effective.

PD representatives will be invited to sit on the Council to provide input
from the PD community into the NIH coordinated planning process.

*** Epidemiology and data for planning and research into causes and treatment
of  PD.

Primarily NINDS responsibility:

NINDS intends to plan a broad study on Neurological diseases epidemiology in
conjunction with other Institutes (aging, mental health).

NINDS has initiated the process of developing the "registry" called for in
the Udall Act and seeks PD community input into the process.

The PD community would have input into the planning and data collection
through direct interaction with NINDS and representation on the NIH
Coordinating Council.  PD organizations would have valuable resources to
offer,  such as grass roots access to patients nationally.

*** Initiation of scientific conferences to identify research opportunities.

NINDS intends to plan annual rotating conferences  in areas of surgical
treatments, medical treatments, and pathogenesis.

NINDS has conference grants to support initiatives of PD organizations.

*** NIH definition of "focused" (Appropriations Committee Report Language)
research and other matters related to accountability to demonstrate
implementation of the Udall Act.

Individual PD organizations work with Congress to assure that NIH is
accountable to implement the Udall Act.  NINDS and PD organizations may share
information on the complex issues of coding research for reporting to
congress.

*** PD community support for recent rulings of the NIH to continue stem cell
research and the efforts of some in Congress to double the NIH budget over 5
years.

Individual PD organizations take responsibility to participate in coalitions
(i.e. APDA and PAN have joined a coalition of voluntary
health organizations organized by the Alliance for Aging Research, which is
aimed at dispelling myths and educating Congress on the value of stem cell
research).

Collectively through the PD coordination group and others and individually,
PD organizations will communicate with Congress and the
Executive Branch (i.e. White House, OMB, and HHS) about the great promise and
need for increased PD research funding.

Perry Cohen
April 29, 1999

-------------------------------
NINDS RESPONSE

On Friday, 4/30 I received the communication below from Dr. Fischbach,
Director of NINDS, which outlines progress on the list of activities that we
discussed in our March meetings with NIH.  It appears that we have the door
open to play a constructive liaison role with NIH on behalf of the
Parkinson's community.


Perry,

Thanks for the Summary. E-mail is a very good way to communicate in our hectic
world. You can contact me directly or you can contact Gene Oliver or John
Marler, the two NINDS Program Directors most closely related to Parkinson's
Disease issues.

We have planned an NIH Parkinson's Disease Coordinating Committee meeting in
early June. The group wanted to meet once in the late Spring and then invite
the
patient Advocay groups to the Fall meeting.

We have also progressed on the series of workshops that I described to you. We
will begin with a workshop on pathogenesis - probably in the Fall, and this
will
be followed by a workshop on medical therapies and then one on surgical
approaches. the cycle will be repeated on a regular basis. We hope for a
detailed workshop every 6 - 12 months.

Gerry