Date: =09Friday, March 13, 1998 11:39:13 AM
From: [log in to unmask]
Subj: =09 March Action Advisory
Please contact Mike Claeys  [log in to unmask]  with any questions.
-------------------------------

Action Advisory -- March 13, 1998



Funding the Udall Act:  Focus on Appropriations



Background:

     The advocacy campaign resulting in 1997=92s historic enactment of th=
e

Morris K. Udall Parkinson=92s Research Act generated unprecedented

visibility and momentum for the Parkinson=92s community.  Passage of the

Udall Act presents us with the next paramount goal: securing the

appropriation of the $100 million in specific research focused on

Parkinson=92s as authorized by the Udall Act.



     To fund the Udall Act requires a larger and more coordinated

advocacy effort=97one designed to create the strongest, most

representative Parkinson=92s lobbying contingent ever seen on Capitol

Hill.  The focal point of this effort will be the 1998 Public Policy

Forum in Washington, DC, to be held June 14 - 17.  To be successful

then, however, requires a major outreach effort now.



     There is no doubt that the face-to-face lobbying of dedicated

citizen advocates has been a critical part of the Parkinson=92s

community=92s recent success.  To garner the appropriations fully funding

the Udall Act, we need to develop effective advocates and an active

presence in each of the districts or states represented by the 29

Members of the House and Senate Labor/HHS Appropriations Subcommittees.



Republican                                         Democrat

John Edward Porter, Ill., Chairman      David R. Obey, Wis.

C.W. Bill Young, Fla.                        Louis Stokes, Ohio

Henry Bonilla, Texas                           Steny H. Hoyer, Md.

Ernest J. Istook, Jr., Okla.                  Nancy Pelosi, Calif.

Dan Miller, Fla.                                    Nita M. Lowey, N.Y.

Jay Dickey, Ark.                                Rosa DeLauro, Conn.

Roger F. Wicker, Miss.

Anne Northup, Ky.









Subcommittee on Labor, Health and Human Services, and Education

184 Dirkson Building

Washington, DC 20510

(202)224-7230



Republican                                         Democrat

Arlen Specter, Penn., Chairman        Tom Harkin, Iowa

Thad Cochran, Miss.                    Ernest Hollings, S.C.

Slade Gorton, Wash.                     Daniel Inouye, Hawaii

Christopher Bond, Missouri            Dale Bumpers, Ark.

Judd Gregg, N.H.                        Harry Reid, Nev.

Lauch Faircloth, N.C.                    Herb Kohl, Wis.

Larry Craig, Idaho                       Patty Murray, Wash.

Kay Bailey Hutchison, Texas









What We Need to Do:

     The House and Senate Appropriations Committees and Subcommittees

will spend the next two to three months holding hearings on topics under

their jurisdiction.  The primary purpose of these hearings is to provide

Members with information to consider as they craft the fiscal year 1999

Appropriations bills.  The bills will likely be finished in September.

This means the Public Policy Forum in June will be well timed to

influence the final FY99 Labor/HHS Appropriations bill.  For maximum

impact, we need to get the largest possible number of advocates from the

Appropriators=92 districts to attend the Forum on behalf of the support

groups in their area.



Preparing For the =9298 Forum=97Timetable for Success:

Our Goal:  A Community Action Team (CAT) made up of one or more

residents of the Appropriator's district who are willing to learn about

advocacy and help lead the effort.



To find and develop CATs, we need your help doing the following:



March 15th=97April 15th:  Find candidates for CAT involvement, using name=
s

provided by PAN, PDF, APDA and NPF.  (Call us now for names!)



April 15th=97June 13th:  Work with the candidates from each district and

develop commitments as CAT members.  Remember: The earlier people are

contacted, the more like they will be able to attend the Forum.



June 14th=9717th:  Have the CAT leaders and representatives from the

Appropriators' districts in Washington with us!



Best Case Scenario for the Most Successful "Fund the Udall Act" Effort:

Before the Forum, a CAT in each Appropriator's district is organized and

active, with solid contact with the Member=92s staff person responsible

for health issues.  At least one person from the district attends the

1998 Public Policy Forum in Washington, DC, with a scheduled appointment

with either the Appropriator or health staffer, and brings with them

letters or petitions signed by other Parkinson's community members in

the district.



Next Best:  No Forum attendee, but a CAT is established and active in

district, has contact with the Appropriator=92s health staffer, and

letters or petitions sent from district to coincide with the June Forum.



Next Best:  No CAT is in place, but contact has been made with concerned

people in district, letters or petitions are sent along with constituent

names or support groups to represent in Congressional visits during the

Forum.



Next Best:  No letters or petitions from within district.  Attempted to

make contact with activists in district, but no specific contacts or

support groups to represent during the Forum.



Worst:  No contacts made in the Appropriator's district.





Examples of Advocates in Action: Join Them!

     The highest levels of activity outlined above are attainable with

hard work and persistence.  Below are three examples of advocates who

have taken personal responsibility for a member of the House or Senate

Labor/HHS Appropriations Subcommittee and done what it takes to forge an

ongoing dialogue about Parkinson=92s disease and the legislative

priorities of the community.



Stephanie Dorsh, North Carolina (constituent of Senator Lauch Faircloth,

a Republican member of the Labor/ HHS Appropriations

Subcommittee)=97Stephanie participated in her first advocacy effort durin=
g

the 1997 Public Policy Forum.  Through her compelling personal appeal

and persistence, Stephanie helped sign up eight cosponsors out the 14

Member North Carolina delegation.  This year Stephanie is working with

experienced New Jersey advocates Dale Severance and Margaret Tuchman to

greater organize efforts in her state and direct them toward Senator

Faircloth.



Gayle Zoeller, Kentucky (constituent of Congresswoman Anne Northup,

Republican member of Labor/HHS Appropriations Subcommittee)=97Gayle has

attended the last two Public Policy Forums, during which she met with

Congresswoman Anne Northup and her staff.  Upon returning home, Anne has

kept up the contact by organizing her local support group, inviting

Northup to visit support group meetings, publishing letters in her local

newspapers and garnering local television coverage=97all of which served

to educate Rep. Northup and the people in her Kentucky district.

Continuing that effort, Gayle has sought out mutual friends to also

speak with Rep. Northup regarding the need for additional Parkinson=92s

funding.



     All this work has paid off.  Earlier this year, while addressing a

meeting of medical research proponents on Capitol Hill, Northop

specifically cited Gayle as an example of a highly credible and

effective advocate who has educated her about Parkinson=92s and reinforce=
d

her views on the importance of medical research funding.



Jim Cordy, Pennsylvania (constituent of Senator Arlen Specter, Chair,

Appropriations Labor/HHS Subcommittee)=97A veteran of three Forums and an

outstanding community advocate, Jim has set his sights on the Senator

Specter.  Jim has met personally with Specter and his staff, and

established a strong relationship with Parkinson=92s researchers at the

University of Pittsburgh.



     Jim is helping to organize an event at the University showcasing

their expanding Parkinson=92s research program for key members of the

Congressional delegation.  The Members of Congress will learn of the

tremendous research opportunities in Parkinson=92s, and develop pride in

excellent programs in their own states.  Jim is also organizing a

state-wide letter and petition campaign.



Do What You Can, As Much As You Can!

     Stephanie, Gayle and Jim are excellent examples to follow.

Although not everyone will be able to generate newspaper and television

stories, anyone can write a letter to the editor (the Network has

samples to get you started).  Not everyone has a local Parkinson=92s

research facility or lives in the home state of a very important

Senator, but anyone can ask their own physician or neurologist to

contact their elected officials and promote greater mutual understanding

of Parkinson=92s and the need for additional research funding.  Stephanie=
,

Gayle and Jim have used their own initiative, skills and the resources

available to them to create the most effective advocacy campaigns they

can.  And you can do the same.  The Network and your fellow advocates

are here to help you.





Message to the

Labor/HHS Appropriators

Thank them for including the Udall Act in the final version of the

fiscal year 1998 Labor/HHS Appropriations bill.



Remind them of the importance of finishing what they started by

including funds for the full $100 million in Parkinson=92s-focused

research in the fiscal year 1999 Appropriations bill.



Work with them to ensure they understand the human and fiscal costs of

Parkinson=92s on their districts and the country as a whole, the

incredible potential of research to reduce these intolerable costs, the

persistent under-funding of Parkinson=92s research through the NIH, and

the commitment to address this urgent need they expressed just a few

months ago.



Urge them to speak directly with their Committee Chair (either Senator

Specter or Congressman Porter) and express their desire to include full

funding for the Udall Act in the FY99 Appropriations bill.



If your Member is a Republican, urge them to also speak directly with

the Majority Leaders of their respective bodies (Newt Gingrich in the

House and Trent Lott in the Senate) and express their support for making

full funding of the Udall Act a legislative priority for this session of

Congress.

-----------------------------------------------------
Date: Fri, 13 Mar 1998 03:36:37 -0800
From: "Parkinson's Action Network" <[log in to unmask]>
Reply-To: [log in to unmask]
Organization: Parkinson's Action Network