 |
 |
for those of you who haven't sent in your letters to your government officials, here's an easy way ...maybe you all knew about it but I just discovered a site called www.emergencyroom.com that has a link to the Senate...just click on it, select California or whatever state you're in and your senators names come up, click on them to send an email...then I tried a www.house.com and got my representative .... all I had to do was complete their email form with my message. Apologies to you if you all knew about it...but at this hour of the morning (I've been up since 2 am) I feel like I discovered something...Joan -----Original Message----- From: Charlotte Mancuso <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Thursday, July 22, 1999 6:28 PM Subject: CALIFORNIANS: URGENT CONGRESSIONAL ADVOCACY NEEDED >Hello, > >May I call upon you ask those in your California region to respond to the following? Mary, >specifically, would you please post this on your California e-mail list, and also reach out to >groups in your area in any other way you can? We must at last get the Udall funding this year to >fund exciting PD research. We've got to have more funding for NIH to fund those exciting Pro-Ceed >(sp) grants. Let's all work for success in speeding up a cure. > >Thank you, >Charlotte Mancuso >////////////////////////////// >Dear Charlotte, > > I contacted you 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 -- and Sen. Feinstein is an important member of > the Subcommittee. 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 Sen. Feinstein 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 or mail letters to Sen. Feinstein, 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. > > 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! > > > 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] >