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First, the Udall Bill is an authorization bill not an appropriations bill. The money still must be appropriated. But, it is still a major, major victory. It sends the strongest message yet to NIH to get moving on Parkinson's. And it sends a strong message to the research community that money will be available. Yes, our job is not over. But we should be able to count on the support of all those cosponsors (plus many more who will see this bandwagon moving forward) during the appropriations process next year. Yes, we will have to be vigilant with NIH. But, they are as you noted employees of the federal government. As such when instructed by Congress they will attempt to comply. Whether any disease has had a cure for those who have it is irrelevant. What is relevant is whether they can find a cure for Parkinson's soon. No one knows that answer for sure, but, it has been stated by many neuroscientists that we know more about Parkinson's than any other neurological affliction. The progress isn't linear, it relies on breakthroughs. How does one predict breakthroughs? It's difficult, but one measure is the number of different approaching being pursued. With Parkinson's we have several genetic approaches, pharmaceutical, growth factors, and several surgical techniques. Another point in our favor was made to me by Ole Hornykiewtz, the researcher who in the '60s discovered dopamine was the missing neurotransmitter in Parkinson's. He said "Parkinson is a simple disease, not complex like Altzheimers or schizophrenia. We may have at our disposal right now all the information necessary to figure out Parkinson's. It simply requires someone to put the pieces together or find the missing piece". When he said "simple" he referred to the fact that we know what part of the brain is malfunctioning, what neurotransmitter is missing and where that neurotransmitter works. I wish everyone on this list could hear the researchers I've been privileged to meet. At first it was only the young bold researchers like Dr. Isacsons who spoke of cures. Then there was cautious optimism by many. Then last June at the PDF 40th anniversary dinner, I heard the older veterans, Stan Fahn and David Marston, talk about the cure being just around the corner. You just gotta believe! Early on only a few thought we could ever passed the Udall Bill. Even to those who believed, getting a majority of cosponsors and both Houses seemed impossible. But here we are. You just gotta believe and you gotta keep working. This influx of money hopefully will be the catalyst we need but perhaps even more important is the higher visibility this Udall effort has given Parkinson's. Joan Samuelson uses the words "invisible no more". Well $100,000,000 is a pretty visible pile of cash. I've rambled quite a bit. But passage of the Udall Bill is a giant step forward. Their is still much to do. Let us pause only briefly to savor the moment, then back to work. One of my favorite sayings is "You can make a difference. Together we can make a BIG difference." We need to build on the cooperative effort that got us this. Passing the Udall Bill is a great chapter but the book isn't finished until the villian is vanquished. -----Original Message----- From: B.Bruce Anderson <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Sunday, November 09, 1997 5:22 PM Subject: Udall/expectations >Does anyone have a clear idea of what happens now? We have given the >National Institutes of Health $100,000,000. Are they now charged with any >responsibility other than to NOT spend it for any other purpose than PD >research? Are they enthusiastic about this, or is there any concern that >their previously stated position of not wanting funds coming their way to >be earmarked going to be a problem? In other words, how can we help ensure >that they will really put this on their front burner? Presumably they have >to get organized for this new venture, to staff up, acquire facilities for >research, etc. I wonder if they are celebrating as much as we are. > >I also wonder what direction they will go with the 100 big ones they just >got. I think most people agree that the first priority is to much more >clearly find the causes. Is it conceivable to any one here that they could >blow through the whole $100 million on just that effort? Will they also be >spending some of it on research into additional and better medications to >relieve symptoms, or is that effort done only by pharmaceutical companies? > > When this whole effort started we heard that someone supposedly in the >know from Harvard said given $100 million a "cure" is likely. Do the NIH >administrators and scientists who are now going to be working on this, and >who presumably now won't be working on something else, share that >conviction - and our enthusiasm? The NIH people are, after all, >bureaucrats. I do not in any way use that as a derogatory term. They are, >by definition, salaried employees of a government bureau. Who is our >watchdog? Is it one of the PD organizations? > >While I'm pondering, one last ponder. Can anyone think of any diseases for >which a cure was found for those who already have it? One can think of >polio, small pox and other contagious diseases which have been eradicated >by inoculation. But that didn't help the people who already were >afflicted. If the result of all of our efforts to get this bill passed is >solely the likelihood that fewer people will have to suffer as we have, >that is indeed a cause for celebration. But hopefully one of us has a >better handle on medical history and can give us some good positive >examples of actual cures!! Not Ken Becker, though. I hear he didn't do >very well in school.