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Testimony - James Cordy Senate Appropriations Committee September 28, 1999 Mr. Chairman and members of the committee. My name is Jim Cordy. I've had Parkinson's disease for 12 years. Formerly I was an engineer in R&D at a specialty steel company. Parkinson's forced me onto disability 4 years ago. I am president of the Greater Pittsburgh chapter of National Parkinson Foundation, on their national board of directors, and leader of the Parkinson 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 the dramatic increase in Parkinson's Disease research envisioned by the Udall bill. I brought this hourglass to serve several functions: Hopefully, it will help me stay within my allotted time, but most importantly, it 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 relentlessly grain after grain, so is my top chamber, my brain, losing nerve cells which control movement day by day. I'm here today to help give Parkinson's a human face. Parkinson's disease is a degenerative disease of the brain. When my medications are working I approach some form of normalcy. Perhaps as I walk away from this table some may think "he doesn'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 are just happening to me. I'm falling behind in my race against time. 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 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 and all who have Parkinson's disease is the real possibility that I might end up as the recently deceased Mo Udall bedridden unable to move or talk. I sometimes think I do not serve the Parkinson's research cause well when I come to Washington. The image I want to leave you with is the horror of Parkinson's disease. A woman from California wrote to me describing the final ordeal her mother suffered. The body of this former Olympic athlete had shriveled to 60 lbs and she had assumed a fetal position for her final three years. Three years. This is the image of Parkinsons I want to leave you with this and the promise of hope. I've heard the saying that God helps those who help themselves. (PAUSE) We have certainly tried to do that. We successfully encouraged Congress to pass the Udall bill. We supported last year's record increase in NIH appropriations. But we didn't stop there. In an effort to make sure there is a continual pool of high quality Parkinson's research proposals a group of people, many with Parkinson's disease, the Parkinson Alliance, began promoting the seed money concept. This is a program is intended to encourage new approaches in Parkinson's disease research. Relatively small grants from the private sector are made to new researchers or researchers previously not working in the Parkinson's field. These small grants are intended to underwrite the cost of developing pilot data for the purpose of submitting an application to NIH for a much larger research grant. Congress and NIH will have to be ready to fund the additional applications that soon will sprout from the seeds. We are going to cure Parkinson's disease. The certainty with which I make that statement is based on the opinion of a majority of neuroscientists that Parkinson's is curable in the near term. The question is when? I've been coming to Washington for 4 years. Conditions have changed dramatically. Back then there was massive budget cutting and huge deficits. Now we have surpluses. Four years ago relatively few knew what Parkinson's was. Now in part because of our efforts, but more because of well known people such as Muhammad Ali and Michael J. Fox , the awareness has increased dramatically.. We have widespread bipartisan support, we have done everything that we can think of to do. All of which should promote a more positive climate for Parkinson disease research. The reasons for passage of the Udall bill were compelling but we have not realized to date the resolve necessary to get the job done. It was suggested that we have a Neurodegenerative Disease Initiative with Parkinson's leading the way. This could result in a possible domino effect that would rid the world of not only Parkinson's but ALS, Huntingtons and Alzheimers. To do this the first piece must fall. We need the commitment and sense of urgency necessary to realize the potential of the Udall Bill and cure Parkinson disease years rather than decades. Senator Specter, committee members, Dr. Fischbach thank you for your support. JUST IN CASE you can't find my address. > > it is [log in to unmask] > > Nice talking to you. > > > ___________________________________________________________________ > Get the Internet just the way you want it. > Free software, free e-mail, and free Internet access for a month! > Try Juno Web: http://dl.www.juno.com/dynoget/tagj. > --------- End forwarded message ----------