---------------------
Forwarded message:
Subj:    Action Update
Date:    95-06-05 13:22:31 EDT
From:    ParkActNet
To:      Rweeks,Bonander,MWeiss,Quabitt
To:      CocoSolo,[log in to unmask]
To:      [log in to unmask]
To:      MhDavila,[log in to unmask]
To:      RickHansen,WILLMMSJ,[log in to unmask]
To:      [log in to unmask],GagaAK
To:      [log in to unmask],PSchark192
To:      JDStedman
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MEMORANDUM
 
TO:  DC Public Policy Forum participants and others
FROM:     Joan I. Samuelson
DATE:     May 30, 1995
RE:  Action Plan
 
This is a followup to our recent D.C. public policy forum, which represented
a quantum leap
for our community in awareness and in organizing itself as a unified voice
for advocacy.
Thanks to all of you who attended for your energy and focus at the Forum and
-- most
importantly  -- for your commitment to work hard for research support and our
other
community needs.
 
This memo confirms the plan of action for the future, and reports on a few
things that have
happened since we met.  It also is being sent to those of you who could not
attend the Forum
but are part of our community's advocacy efforts already.
 
ACTION PLAN
Our top priority is passage of the Udall Parkinson's Research and Education
Act.  Tied to the
success of that effort is having a voice in the budget and  appropriations
process for research
funding.  Other issues may arise that require attention as the year
progresses -- we touched on
several other areas of concern in the Forum presentations and backup
materials, and will
address them specifically as the need arises.  The Udall bill should be your
prime focus,
however, with the constant awareness that we also need sufficient funding for
biomedical
research from the budget and appropriations process to cover the funds ($100
million in 1996)
authorized in the Udall bill.
 
As our speakers at the Forum laid out in detail, passage of the Udall bill
entails a two-fold
effort.  First, we need to work on every member of Congress for a maximum
number of co-
sponsors -- ideally, a majority of both the House of Representatives and the
Senate.  Second,
we need special attention to the chairs and members of the key committees,
which are set out
in the forum materials.
 
NETWORK ACTION: PAN will communicate with the whole Parkinson's community
through periodic (at least monthly, and more frequently as needed) action
advisories.  (See the
enclosed one for an idea of what you will be getting in the future.)  This
will give the status
of co-sponsors and fill you in on anything else going on.  We also will post
updates to the
internet.  We also are a daily resource for any of you needing materials or
with questions
about how to proceed.  Don't wonder -- just call: 800-850-4726.  The Network
also is
working with all the major foundations on a coordinated letter-writing
campaign to their
respective mailing lists, and other efforts.
 
PARKINSON'S COMMUNITY ACTION: Every person should do everything in his/her
power to sign up as many co-sponsors for the bill as possible, with the key
committee
members as special targets.  Use all the strategies laid out at the Forum and
in the briefing
materials. (Call if you need materials or information.) Work individually,
with friends and
family, and with any support groups or other Parkinson's organizations.
 
For those willing to take on more responsibility, we now have people
designated as contact
persons and/or coordinators by state (see the attached list).  Work with
those people and us to
make sure that each Senator and each Congressional district is covered.  If
you can take
responsibility for one of the states not currently covered by anyone, please
let us know.
 
COMMUNICATIONS LINK -- DATA BANK MAINTAINED BY PAN:  A data bank of the
members of Congress, their positions on the Udall bill and other relevant
information is
maintained and updated by PAN and available to people as needed.  This will
rely on
accurate information from you about your contacts with members.  Whenever you
have
contact with a Senator, Congressman or his/her staff, let us know.  Please
submit this
information in writing whenever possible, by sending us a copy of any
correspondence from
them and using the enclosed Congressional Contact form.
 
Coordinators/Contact People, by State
Arizona         Maryhelen Davila, Betty Yokshas
California      Northern        Carol Walton
        Southern        Joanne Nelson/Wellness Interaction Network
Colorado                        Jim Vidamour
Connecticut                             Ann Smedberg - per Paul Smedberg
Delaware                Will Johnston
Florida                         Paul Smedberg/APDA, also maybe NPF
Georgia                         Terry Whitling
Kansas                  Paul Smedberg/APDA
Hawaii                          Christine Chun - per Heath
Kentucky                Betty Yokshas
Lousiana                Barry Green
Maryland                        Ed Blazek
Minnesota               Paul Smedberg/APDA
Missouri                Pat Schark
Nebraska                Rita Weeks
New Jersey -    West    Ken Aidekman
                 -      East    George Cirner
New Mexico                      Maryhelen Davila
New York                        Joel Gerstel/APDA will focus on D'Amato, still need
other contact persons
North Carolina          Paul Smedberg/APDA
North Dakota            Paul Smedberg/APDA
Ohio                            Saul Siegel, Nina Beane
Oklahoma                Judy Mehlhorn
Pennsylvania-   West    Jim Cordy - will focus on Senators and Western PA
                  -     East    Margaret Monty
Texas                   Bob Martone
Utah                    Sue Carter
Virginia                        Lynda Hendricks, Rusty Glazer - will focus on Bliley
                Paul Smedberg/APDA will help
 
The following States need Coordinators/Contact People
 
Alabama         Nevada
Alaska          New Hampshire
Arkansas                Oregon
Idaho           Rhode Island
Illinois                South Carolina
Indiana         South Dakota
Iowa            Tennessee
Maine           Vermont
Massachusetts           Washington
Michigan                West Virginia
Mississippi             Wisconsin
Montana         Wyoming
 
 
Total Senators =100
Goal = 51
Current Co-sponsors = 13
 
Total # of Reps - 435
Goal = 218
Current Co-sponsors - 41
 
ACTION ADVISORY
TO:   Parkinson's-affected community
FROM:     Joan I. Samuelson
DATE:     May 30, 1995
RE:   CURRENT DEVELOPMENTS FOR YOUR INFORMATION
 
      UDALL BILL CO-SPONSOR STATUS:  Thirteen Senators and 41 Representatives
have co-sponsored to date.  They are listed at the end of this memo.  This is
a %50 increase in
Congressmen since the Forum -- Good work!  Action needed:  Keep working!
Start preparing for
August, which is when the Congress stands in recess.  Elected representatives
spend much more
time in their home states and districts then.
 
     NOTES ON KEY MEETING WITH CONGRESS:  Last week, Mort Kondracke, Brad
Udall and I had a productive meeting with Senator Nancy Kassebaum (R-KS),
Chair of the
Senate Labor Committee.  She is not thrilled about the prospect of moving
individual disease
bills through her committee.  We made some progress in convincing her of the
necessity of it in
our case, but she will need to hear from the Parkinson's community as well,
particularly from
other Kansans.  Action needed:  Write Senator Kassebaum, and use any Kansas
contacts you
have to develop support in that state.
 
     A further meeting with Congressman Mike Bilirakis (R-FL), the House
Committee
Subcommittee on Health and the Environment chair, was held with Jim Cordy,
John Scardino and
Mike Zigmond, a Parkinson's researcher from the University of Pittsburgh.
 They report progress
in his interest, but he remains reluctant to endorse the Udall bill.  Action
needed:  Work on
Congressman Bilirakis, and in particular help where you can to develop
contacts in the Tampa-St.
Petersburg area, which is his Congressional district.
 
     BUDGET DEVELOPMENTS:  Thanks to an amendment by Senator Hatfield, the
Senate-
passed version of the Budget Resolution for 1996 has avoided a deep cut in
NIH research
funding.  The budget as proposed by Senate Budget Committee Chairman Pete
Domenici
originally contained a 10% cut in the National Institutes of Health.  This
would destroy the NIH's
ability to give Parkinson's research decent support, and would make the
increase we need simply
impossible.  The amendment to eliminate the 10% cut passed by a vote of
85-14, which was a
great statement of support for biomedical research.
 
The Hatfield amendment takes the cuts across the board from other programs
(except Defense)
and puts NIH funding back at 1995 level.  Senator Hatfield hoped originally
to take the cut from
the Defense Department, which  already receives in excess of $250 billion in
funding, but he
could not develop adequate support for that proposal.
 
An adequate NIH budget is essential to our hope to get anything near adequate
funding for
Parkinson's research support.  Even level funding (equal to 1995) means an
effective cut, due to
annual biomedical inflation of approximately four per cent.  Meanwhile,
Parkinson's research
receives far less than most other research areas, and badly needs an increase
in funding.
 
The budget must be approved by a House-Senate conference committee which
reconciles the
differences between the two plans.  The Hatfield proposal (i.e., NIH funding
at the 1995 level)
risks getting cut again, because the House has a 5% cut in NIH funding.
Action:  1) Keep mentioning the necessity of adequate NIH funding in the 1996
budget in your
discussions.  The Hatfield proposal is a bare minimum to keep the possibility
of an adequate
Parkinson's research budget.  2) Thank Senator Hatfield for fighting for
research funding.
 
Senate
Barbara Boxer (D-CA)
Thad Cochran (R-MS)
Wendell Ford (D-KY)
Mark Hatfield (R-OR)
Daniel K. Inouye (D-HI)
Robert Kerrey (D-NE)
Frank Lautenberg (D-NJ)
Barbarba Mikulski (D-MD)
Paul Simon (D-IL)
Alan K. Simpson (R-WY)
Ted Stevens (R-AK)
Paul Wellstone (D-MN)
 
House
Gary Ackerman (D-NY)
Neil Abercrombie (D-HI)
Robert Andrews (D-NJ)
Robert Borski (D-PA)
Rick Boucher (D-VA)
William Coyne (D-PA)
Peter DeFazio (D-OR)
Peter Deutsch (D-FL)
John Dingell (D-MI)
Julian Dixon (D-CA)
Lane Evans (D-IL)
Barney Frank (D-MA)
Jim Greenwood (R-PA)
Alcee Hastings (D-FL)
Maurice Hinchey (D-NY)
Sheila Jackson-Lee (D-TX)
Harry Johnston (D-FL)
Marcy Kaptur (D-OH)
Gerald Kleczka (D-WI)
Greg Laughlin (D-TX)
Nita Lowey (D-NY)
Edward Markey (D-MA)
Jim McDermott (D-WA)
George Miller (D-CA)
Patsy Mink (D-HI)
Joe Moakley (D-MA)
Constance Morella (R-MD)
James Oberstar (D-MN)
Frank Pallone (D-NJ)
Ed Pastor (D-AZ)
Nancy Pelosi (D-CA)
Charles Rangel (D-NY)
Jose Serrano (D-NY)
Norman Sisisky (D-VA)
Gerry E. Studds (D-MA)
Edolphus Towns (D-NY)
Fred Upton (R-MI)
Bruce Vento (D-MN)
Henry Waxman (D-CA)
Robert Wise (D-WV)
Lynn Woolsey (D-CA)