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Hello again everyone, I posted a message last week, on behalf of the Parkinson's Action Network (PAN), about urging Congress to increase federal funding for Parkinson's research during the Appropriations process. The Labor-HHS Appropriations bill, which funds the National Institutes of Health (NIH), was originally scheduled to be marked up in the House on Wednesday 7/21, and in the Senate on Thursday 7/22. However, both mark-ups have both been indefinitely postponed. While there is a chance that either of these mark-ups could take place before the Congress adjourns for the August recess, it is more likely that the mark-ups will occur some time after Labor Day. As you know, the Parkinson's community needs to urge members of the Labor-HHS Appropriations Subcommittee to increase federal funding for Parkinson's research. *If your Member of Congress is listed below as a member of the Subcommittee, your assistance would be greatly appreciated.* The postponement of the mark-ups affords the Parkinson's community an essential opportunity to mobilize and expand grassroots efforts. Additional calls, letters, faxes and emails can be sent to Congress, making the dire need for increased Parkinson's research visible. If you could continue to help organize advocates in your state or district to take the following actions ASAP (and throughout the month of August), it would be extremely helpful. We would like to set a goal of at least 100 calls and 100 letters to each key Subcommittee member. 1) Place calls to your Member on the Subcommittee (see list) using the attached script as a guide. If you don't have the phone number, the Capitol Switchboard at 202-224-3121 will connect you to the office. 2) Fax or mail letters to the Member, using the attached sample letter as a guide. 3) Ask others (members of your support group, church, community, etc) to place calls and send letters as well. 4) Try to schedule appointments with your legislators when they are in their states/districts during the August recess. The mark-ups of the Appropriations bills can set funding benchmarks for important programs like Parkinson's research at the NIH. Securing favorable legislative language during both the House and Senate Subcommittee mark-up phases increases the likelihood of a favorable final result Parkinson's research. PAN will continue to be in contact with you throughout the next few weeks to help ensure the Parkinson's community makes a unified and significant impact on Congress, and will update you regarding the status of both markups as that information becomes available. Please call PAN at 800-850-4726 with any questions and keep us updated on your efforts: send us copies of your letters (PAN, 840 Third Street, Santa Rosa, CA 95404), and email [log in to unmask] or call us with reports. Thank you for all your hard work! **List of Members of House and Senate Labor-HHS Appropriations Subcommittees** HOUSE -John Edward Porter, Chairman (R-10th IL) -C.W. Bill Young (R-10th FL) -Henry Bonilla (R-23rd TX) -Ernest J. Istook, Jr. (R-5th OK) -Dan Miller (R-13th FL) -Jay Dickey (R-4th AR) -Roger F. Wicker (R-1st MS) -Anne Northup (R-3rd KY) -Randy "Duke" Cunningham (R-51st CA) -David R. Obey, Ranking Member (D-7th WI) -Steny H. Hoyer (D-5th MD) -Nancy Pelosi (D-8th CA) -Nita M. Lowey (D-18th NY) -Rosa DeLauro (D-3rd CT) -Jesse L. Jackson, Jr. (D-2nd IL) SENATE -Arlen Specter, Chairman (R-PA) -Thad Cochran (R-MS) -Slade Gorton (R-WA) -Judd Gregg (R-NH) -Larry Craig (R-ID) -Kay Bailey Hutchison (R-TX) -Ted Stevens (R-AK) -Jon Kyl (R-AZ) -Tom Harkin, Ranking Member (D-IA) -Ernest Hollings (D-SC) -Daniel Inouye (D-HI) -Harry Reid (D-NV) -Herb Kohl (D-WI) -Patty Murray (D-WA) -Dianne Feinstein (D-CA) **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] _________________________________________________________ Do You Yahoo!? Get your free @yahoo.com address at http://mail.yahoo.com