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Statement of James T. Cordy before House Appropriations Subcommittee for the Departments of Labor, Health & Human Services, Education and Related Agencies February 4, 1998 10:00am Mr. Chairman and members of the committee: My name is Jim Cordy. I have Parkinson's disease. Formerly I was an engineer in R&D at a specialty steel company. Parkinson's forced me onto disability 3 years ago. Currently I am President of the Pittsburgh chapter of the National Parkinson Foundation, a member of the National Parkinson Foundation Board of Directors, and the leader of the Parkinson's Alliance. I am also part of that magnificent grassroots effort which saw enacted into law the Morris K. Udall Parkinson's Research and Education Act. I'm here today to give testimony in support of fully funding this authorization at $100 million. This hourglass serves several functions: It will help me stay within my allotted time, but it also is intended to convey to you that we who have Parkinson's are in a race against time. Just as the top chamber is depleted relentless grain after grain, so is my top chamber, my brain, losing nerve cells which control movement day by day. The Parkinson's Alliance, is not another organization, rather it's a loosely organized overlay of the current organizations - it is the voice of the people affected by Parkinson's. Those people first want to thank this subcommittee for allowing this bill to be part of the 1998 Appropriations bill. Obviously you appreciate the broad based bipartisan support this bill has. This was demonstrated by last years 95-3 roll call vote in the Senate amending it to the Appropriations Bill and the 254 cosponsors in the House. The overwhelming majority neuroscientists agree we are poised on the threshold of curing this sinister disease. This hourglass is an attention getter which I hope distinguishes my testimony at this busy hearing, the promise of a near term cure distinguishes Parkinson's - and that is not a gimmick- its do-able NOW!!! As I speak, researchers from all over the world are assembling at a meeting (in Arizona) to discuss that promise. Let us provide them with the resources to make the promise a reality, find the cure, and then direct those resources at other diseases. If we as a nation don't find a cure or new effective treatment for these age related diseases, when the baby boom ages, it's going to devastate any attempts we've made to date to balance the budget. There are two other economic points which favor increased funding for Parkinson's disease research: Current NIH research funding as measured by dollars per person afflicted is simply not equitable. Parkinson's is estimated to cost society $25 billion - that's every year. If this $100 million investment in Parkinson's research results in a cure, for every dollar spent, we will save $250. I'm here today to help give Parkinson's a human face. Parkinson's disease is a degenerative disease of the brain. As a result my hands and legs sometimes shake and my body is stiff. I have witnessed this disease slowly but surely erode my physical abilities. I can no longer tie my tie, wash my hair or tuck my shirt in. I can't shuffle papers or drive my car. I have lost my facial expression, sense of smell and I now have a monotone voice. But I'm wouldn't be here today if that was the extent of my problems. Unfortunately those are just previews of the horrors to come if we don't cure this sinister disease. What terrifies me is the real possibility that I might end up as Mo Udall, bedridden unable to move or talk. I sometimes think I do not serve the Parkinson's cause well when I come to Washington, for when my medications are working I approach some form of normalcy. Perhaps as I walk away from this table some may think, "he dosn't look so bad to me". But those medications without which I would be unable to function lose their effectiveness with time. The beginnings of that loss is just happening to me. I'm falling behind in my race against time. The image I want to leave you with the image of the horror of Parkinson's. A woman from California wrote me to tell of the death of her mother, a former Olympic athlete who had Parkinson's. She described how this once athletic body had shriveled to 60 lbs and had assumed a constant fetal position for the last several years. That's the image of Parkinson's I want to leave with you. That and the promise of a cure. Let me assure you that I'm not going to sit back and wait for my body to stop working. I am determined to win this race, but I need your help. Before closing, I will turn this hourglass over. The top chamber is replenished. Just as the scientific breakthrough which cures Parkinson's will replenish my brain cells which control movement. DON'T LET TIME RUN OUT for me and the 1 million Americans who have Parkinson's. Not when the finish line is within sight. janet paterson 52 now / 41 dx / 37 onset 613 256 8340 po box 171 almonte ontario canada K0A 1A0 a new voice: <http://www.geocities.com/SoHo/Village/6263/> <[log in to unmask]>