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Dear fellow Parkinsonians and concerned others, I am not sure if this is going to get on the PD list server. (I am resending it because it is not clear from the "returned" mail I received that it did get through, but it seems that the last two pages were cut off (the sample letter to "kids") So, here it goes again! Nevertheless, these are suggestions from Beverly K. Steward (I am trying to help her to get this posted). As many of you know, there is a nationwide letter writing campaign to support the Morris K. Udall Research & Education Act. As of July 12, 1995, 18 Senators and 49 House of Representatives have co-sponsored the bill. Many more of our congressmen need to sign this bill. If you do not know who your members of Congress are you can get that information from your state's capitol Federal Election Commission or contact the Parkinson's Action Network (800) 850-4726 for names and further information regarding the bill. Following is a fact sheet and suggestions for letter writing that I have compiled and a few sample letters that you might want to use as a guideline for your own personal letters. In addition, I have included a sample letter in which I ask my children also to send letters. The Fact Sheet and suggestions for letter writing: 1) Ask representative to co-sponsor the Morris K. Udall Research & Education Act (Senate Bill #684 and House Bill #HR 1462). 2. At least 1 million Americans are afflicted with Parkinson's Disease -60,000 more diagnosed each year - 40% are under the age of 60 and should be in the workforce. 3. Of the many NIH funded research programs Parkinson's is the lowest of major disorders - $26 per patient per year (approximately $26 million). Parkinson's cost the US $6 billion per year in lost productivity, disability benefits, etc. 4. All neurological diseases together cost the nation $600 billion annually. 5. In this "Decade of the Brain" we know when they find a cure for one there is overlap to other neurological diseases. 6. Scientists/researchers believe they are very close to a cure for PD, perhaps in 5 years. 7. Big issues today are health care costs and reducing the deficit. The best way to reduce both is to find cures for chronic diseases. 8. Ask if they wil Co-sponsor this bill and ask for a definite answer. 9. A handwritten letter is best, if not possible typewritten is all right. 10. Be sure to say how Parkinson's has impacted you and/or your family. Here are a few sample letters: The Honorable........... Senate (U.S. House of Representatives) Washington, D.C. 20510 (20515) Dear Senator (Congressman/woman)...... I have trouble with fine figure coordination which is a symptom of my Parkinson's Disease and makes it hard for me to write. For this reason I am using this form letter. I hope you will give it as much credibility as if I had written it myself. I want to urge you to co-sponsor the Morris K. Udall Parkinson's Research and Education Act (HR 1462) which was introduced to Congress in April of this year by Senator Hatfield and Congressman Waxman. This bill authorizes $100 million to expand Parkinson education and research. Of the many NHI-funded research programs, Parkinson's is the lowest of the major health disorders...only $26 million a year. Similar legislation has been used to launch aggressive research programs aimed at finding cause/cures for other diseases. It is time for Parkinson's Disease research to receive more attention. It is estimated that there are 1 million to 1.5 million Americans afflicted with Parkinson's, including 60,000 newly diagnosed patients each year. Approximately 40% of these are under the age of 60 and would like to be part of their nation's work force. The cost to our country of this disabling disorder is $6 billion annually in health-related expenses, lost productivity and indirect disability-related fiscal outlays. Recently, Ole Isaacson, M.D. an eminent Parkinson researcher from Harvard Medical School, has said that a breakthrough for the cause/cure for Parkinson's is as close as five years, given continued adequate financial resources for research. In this "Decade of the Brain", when science is so close to an answer to this disease, it is extremely short-sighted not to adequately fund more research and risk losing the able researchers already trained to work on the project. The cost effectivenss of funding $100 million to eradicate in five years a disease which costs the nation $6 billion annually is clearly evident. Once again I urge you to become a co-sponsor of this important bill. It should be given your high priority for action. Your office wil be contacted to receive your decision on this matter. Sincerely, Another sample letter: The Honorable..... United States Senate (House of Representatives) Washington, D.C. 20510 (20515) Dear Senator (Congressman/woman).. I would like to urge you to co-sponsor the Morris K. Udall Parkinson Research and Education Act S 684 (HR 1462) which was introduced to Congress just this past April by Senator Hatfield and Congressman Waxman. This bill is greatly needed by the Parkinson community because of the present underfunding of Parkinson's Disease research by the federal government. Parkinson research now only receives $26 per patient in direct funding, the least of any major disease. There are between 1 and 1.5 million Americans afflicted with this disorder with a subsequent cost to our society of nearly $6,000,000,000 annually. Approximately 40% of these people with Parkinson's are under the age of 60 and would like to be part of our nation's work force. The cost for SSI and Medicare benefits are constantly mounting. (Insert personal experience on how Parkinson's has affected the patient and family.) The Udall Bill would authorize $100 million for expanding Parkinson's research. Recently, Ole Isaacson, M.D. an eminent Parkinson researcher from Harvard Medical School said that a breakthrough for the cause/cure for Parkinson's is as close as five years, given continued financial resources for research. When science is so close to an answer to this debilitating disease it is extremely short-signed not to adequately fund more research and chance losing the able researchers wanting to work on the project. The cost-effectiveness of funding $100 million to eradicate this disease which costs the nation $6 billion annually is clearly evident. Once again I urge you to consider co-sponsoring this bill in order to utilize and extend research which has already led to the brink of discovery of a cure for Parkinson's Disease. This bill should have your high priority for action. Your office will be contacted soon to obtain your decision on this matter. Sincerely, (Signature) Name Finally, here is a sample letter which I recently wrote to my children to ask them to write to their Senators and Representatives. Dear Kids, I am asking you if you would please take the time to write to your Senator and Congressperson for me, urging them to co-sponsor the Morris K. Udall Parkinson Research and Education Bill introduced in Congress in April of this year by Senator Hatfield and Congressman Waxman. In order for this bill to pass it has to be co-sponsored by more than 225 Congressmen and 51 Senators. At the present time we have only a few actually co-sponsiring it. When you write tell them that Parkinson's afflicts between 1 and 1.5 million people in the United States 40% under the age of 60 who would like to be part of the work force. Be sure to say something personal about the problems Parkinson's creates for the patient and famiy, and include your hope that your future will not be clouded with the threat of this disorder. Let them know that you want to be able to benefit from your contributions to Social Security when you reach retirement age and not have it all depleted taking care of people with chronic illnesses like Parkinson's. Inform them that this action would be very cost-effective because Parkinson's Disease costs $6 billion annually, and the Udall bill is only asking for $100 million to fund further Parkinson research. At the present time only $26 million is funded, about $26 per patient, whereas cancer receives $295 per patients and AIDS/HIV gets $1079 per patient. With a possible cure as close as 5 years, according to scientists working on Parkinson research how foolish not to fund further research at this time and eradicate completely this devastating and disabling disorder. Writing your own personal experience seeing the effects of Parkinson's will be very effective, and surprisingly, a hand-written letter carries more impact in this day of computers. A phone call to the representatives home office would add even more emphasis. They tally the number they receive... more calls, more important for them to listen and consider! Try to get them to actually commit to co-sponsor this bill. I really thank you for helping me in this effort. I do not want to see another generation have to live with Parkinson's. For your future as well as mine this is important legislation which needs to be enacted promptly. Love, Many thanks to Beverly K. Steward for submitting all the information and her samples of letters. Now, let's get busy and write them, and get your children, relatives, etc. to write too!