--------------------- 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 CC: [log in to unmask],MZobel 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)