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In a message dated 7/18/99 6:14:59 PM Central Daylight Time, [log in to unmask] writes: << Have relatives in Dallas, Baltimore, and New Mexico. Also relatives in Longview. >> Nita, Did you catch the action alert put out by PAN? That gives a much more complete listing of the important folk to reach. By the way, we are moving soon to Lubbock. Do you know of a young onset PD support group there? Is the Tarbox Clinic at Texas Tech still open? Regards, WHH 55/38/37 Subj: Parkinson's Action Network - Urgent Appropriations Information and Request Date: 7/16/99 2:00:29 PM Central Daylight Time From: [log in to unmask] (Heather Zesiger) To: [log in to unmask] ([log in to unmask]) Dear Mary and Bill, Appropriations season is in full swing in Congress and I'm writing on behalf of PAN to give you an update and ask for your help. The Labor-HHS Appropriations bill, which funds the National Institutes of Health, is scheduled to be marked up next week - in the House Wednesday 7/21, and in the Senate Thursday 7/22. The markups may be postponed but we need to be prepared and work with the schedule that the Committees have posted. PAN will update you regarding the status of both markups as that information becomes available. The Parkinson's community needs to urge members of this key Appropriations Subcommittee to increase federal funding for Parkinson's research -- and House L-HHA Subcommittee Chair Porter and Rep. Jackson are important members of the Subcommittee. If you could help to organize advocates in your state or district to take the following actions ASAP (note above deadlines), it would be extremely helpful: 1) Place calls to Subcommittee Chair Porter and Rep. Jackson using the attached script as a guide. If you don't have the phone number, the Capitol Switchboard at 202-224-3121 can connect you to the office. 2) Fax letters to Subcommittee Chair Porter and Rep. Jackson so that they arrive in time for the markups, using the attached sample letter as a guide. 3) Ask others (members of your support group, church, community, etc) to place calls and fax letters as well. 4) Try to schedule appointments with your legislators when they are in their states/districts during the August recess. Thank you! Please keep us updated on your work: send copies of your letters to PAN at 840 Third Street, Santa Rosa, CA 95404. Please call PAN at 800-850-4726 with any questions. Guideline Telephone Script for Appropriations 1999 Hello. This is [name] with the Parkinson's Action Network. May I please speak with the staff person who handles health care issues? [Yes, voicemail is fine if the person is not available]. My name is ____________ and I am calling to urge [Senator/Representative] ____________ to support much needed funding increases for Parkinson's disease during consideration of the fiscal year 2000 Labor/ HHS Appropriations bill. As you probably know, in 1997 Congress overwhelmingly adopted the Morris K. Udall Parkinson's Disease Research Act, historic legislation authorizing the National Institutes of Health to devote up to $100 million per year for Parkinson's-focused research. To date NIH has not fully funded the Udall Act - despite tremendously promising research and a compelling national need. I urge your boss to act this year to follow through on the promise of the Udall Act by supporting funding increases for the National Institute of Neurological Disorders and Stroke and the National Institute of Environment Health Science for FY 2000. To provide the resources for these much needed increases, I ask the [Senator/Representative] to support the effort to ensure that the NIH budget is on track to double over five years. Please urge your boss to act this year on these important increases by writing a letter or talking to the Chair of the Appropriations Committee. Time is not neutral for people with Parkinson's - the disease is progressive, chronic and absolutely relentless - and we can't afford to wait any longer. Researchers have described Parkinson's as the "most curable neurological disorder" - but finding the cure in time for those currently suffering requires the additional funding authorized by the Udall Act. [For Representatives Only] Please also ask your boss to consider joining the Congressional Working Group on Parkinson's Disease led by Representatives Carolyn Maloney and Fred Upton. Thank you. Can I count on hearing back from you about the outcome of the fiscal year 2000 Labor/HHS Approriations bill mark-up? [Give the staff person your name, address, and phone number so that s/he can follow up with you.] [If any questions arise that you do not feel comfortable answering, ask the staff person to call the Parkinson's Action Network at 800-850-4726.] Sample Letter for 1999 Appropriations The Honorable [First and Last Names] [United States Senate/United States House of Representatives] Washington, DC [20510/20515] Dear [Senator/Representative] [Last Name]: Like more than one million other Americans, I [my husband/wife/parent etc.] suffer[s] from Parkinson's disease - a devastating neurological disorder that destroys brain cells controlling the body's motor function. I ask that you, as a member of the [House/Senate] Labor/HHS Appropriations Subcommittee, do all you can to ensure that research focused on Parkinson's disease receive the funding called for by Congress within the fiscal year 2000 National Institutes of Health (NIH) budget. In 1997 the Congress overwhelmingly adopted the Morris K. Udall Parkinson's Disease Research Act, historic legislation that authorized the NIH to devote up to $100 million per year for Parkinson's-focused research. To date that funding has not been appropriated -- despite tremendously promising research and a compelling national need. Moreover, the NIH continues its disturbing practice of reporting to Congress funding totals for Parkinson's that include a significant amount of research - more than half! - that is not truly focused on Parkinson's disease as required by the Udall Act. I urge you to act this year to follow through on the promise of the Udall Act by adding to basic Parkinson's disease research the NIH is already conducting, specifically funding increases of $50 million and for the National Institute of Neurological Disorders and Stroke and $25 million for the National Institute of Environment Health Science in the fiscal year 2000 Labor/HHS Appropriations bill. To provide the resources for these much needed increases, I urge you to support efforts to keep the NIH budget on track to double over five years. Please act this year on these important increases. Time is not neutral for people with Parkinson's - the disease is progressive, chronic and absolutely relentless - and we can't afford to wait any longer. Researchers are tantalizingly close to the cure, but finding it in time for those currently suffering requires the additional funding authorized by the Udall Act. I look forward to receiving your response. Sincerely, [Your Name, Organization, and Address]