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Thank you Dale. Your letter to the president got me off my duff. Perhaps our two letters may motivate others. ---------- January 7, 1996 Office of the White House Washington, DC. Dear President Clinton: I am writing you to ask that you take a leadership position in the battle to cure Parkinson's Disease. Last year a grass roots effort resulted in a bill increasing federal spending for Parkinson's Disease research amassed 62 cosponsors in the Senate and 240 cosponsors in the House. The language of this bill was amended to the NIH Revitalization Bill and passed by unanimous consent in the Senate. Despite having a majority of cosponsors in the House, this bill never made it out of the Commerce Committee. This year we are back. It is not enough for us who suffer from this dreadful disease to be told what they great job we did in raising awareness. It is not enough to have my Senators and Congressman be cosponsors. It is not enough to hear Zach Hall, director of NINDS, say they are doing what they can. We want a cure for Parkinson's Disease now. The most frustrating part of this situation is that the majority of neuroscientists believe we are on the threshold of making a dramatic breakthrough if not a cure. With a strong commitment from your office we could look forward to one day soon witnessing a Mohammed Ali absent the trembling hand the world saw as he lit the Olympic flame in Atlanta. This is a disease where the scientist say we have a real shot at victory. That translates not only into a reduction in suffering for those afflicted but also a real reduction in the budget deficit. It is estimated that conservatively Parkinson's Disease costs society $6 billion per year. It is that potential savings that has resulted in even the most fiscal conservatives such as Pennsylvania's Senator Santorum supporting this initiative. We who have Parkinson's Disease were delighted when Dr. Freed was able to speak briefly to you during a campaign appearance in Colorado, and that you chose to mention subsequently, in several instances, the potential for dramatic breakthroughs in Parkinson's Disease. I know this disease touches you personally. Your Attorney General courageously announced that she has Parkinson's Disease. Retired Senator Pell suffered from Parkinson's Disease. The fathers of Senators Wellstone, Robb, and Coats all had Parkinson's Disease. Congressman Joe McDade from Scranton Pennsylvania has Parkinson's Disease. Your new Secretary of Defense was last years recipient of the Mo Udall Award recognizing his support of this legislation. There seem to be two obstacles hindering passage of this legislation and neither of them stand up to an open minded evaluation: Concerns by the right to life supporters about fetal tissue research. Our response is simply one does not choose to have an abortion in order to provide fetal tissue for research. A simple analogy puts this issue in the proper perspective. Pennsylvania's former governor Casey had a heart transplants. The heart came from a murder victim. No one is claiming that heart transplants increased the murder rate. Concerns about earmarking. I believe that the NIH's policy of pursuing the "best science" is indeed the proper policy to follow in general. But as a politician I'm sure you appreciate there are up always legitimate exceptions to even the best policies. Such is the case with Parkinson's Disease. As we are close in a number of different technological areas in Parkinson's Disease Research, it's makes sense from a humanitarian point, a scientific point and an economic point, to two additional resources to achieve that end. I am one of an estimated 1.5 million Americans diagnosed with Parkinson's Disease. As the symptoms to this sinister affliction to not become apparent until over 70% of the necessary brain cells have died, it is estimated that another 1.5 million Americans have Parkinson's Disease but have not yet been diagnosed. I am 49 years old and have had Parkinson's for nine years. I had to go on disability 3 years ago from my position as Metallurgical Manager for Allegheny Ludlum. I have been extremely active in promoting this legislation. My wife and I have spoken personally to both Pennsylvania Senators and the majority of the Congressman. I am convinced that if we allocate a modest increase in funding Parkinson's Disease research that we will realize a breakthrough. But, there is a part of me that is terrified at the prospect of continually degeneration of my bodies ability to function. Please help!