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Washington PAN Reflections II June 17-20, 1996 Scaling the Hill this time was different. In May we seemed to have an air of military precision about us. This time it was more like a gathering of enthusiastic artists who had come together to witness the unveiling of a magnificently crafted piece of genius. This time it was like a gathering of musicians who came to be a part of a great symphonic performance lead by several renown conductors. What made this performance beautiful was that several conductors lead their piece and then sat down in the orchestra and played the music selected by the other conductors. There were only two planned events both in the basement of the Capital Building. Thank you Jim Cordy, and Joan Samuelson for organizing and sharing your stirring words with us. The unscheduled evening events were wildly successful. Monday night at the Holiday Inn Capital, Tuesday we split and went to a couple of different restaurants and Wednesday we ate at Union Station. Monday nearly 40 people attended PAN, APDA and NPF were well represented. More than half were first timers. Thanks Terry Whitling for setting that up. It was apparent from this group of Parkinsonians and caregivers that something special was about to happen. I had an opportunity to sit next to Don Bern of Loma Linda Pallidotomy fame. He has been an advocate for this procedure and over the course of three days I must say I understand why. His only visible PD symptom is that his movements are just a tad slower than I would have expected from his imposing 6' 4" frame. Tuesday morning I paired off with Fred Green of the Dallas APDA and Bill Thorson a New York APDA chapter President. The three of us spent all day Tuesday covering Texas, both Senators and seven congressmen. This being my third trip and the first for both of them I naturally assumed the lead in the early visits but by mid afternoon I felt like I had two skilled veterans with me. Fred lost his wife to PD complications 5 years ago, Bill was the beneficiary of a unilateral pallidotomy at Emory and I am a caregiver of 21 years. What a team! The most memorable of these visits was the one with Senator Hutchison's aide. You may recall this was my third visit to this office. It was unlike any I had previously experienced. A fellow Texan had written to the Senator and included my Pan Reflections from our May visit as part of his petition for support for the Udall bill. That document captured my expression of discomfort from that and prior meetings with this Senators office. Wow, what an impact those writings had. This tme we met in a private conference room. It probably would not be appropriate to report the flow of this conversation other than to say that the meeting was very emotional, shorter than prior meetings, tears flowed on both sides of the table and a higher richer form of communication occurred than in our previous meetings. We will have a response by Tuesday. I pray that it will be a new cosponsor for the Udall bill. Another memorable event was with the Legislative Director from New Jersey Congressman Chris Smith's office. I asked the congressman to withdraw HR 3514 and the ban on the use of aborted fetal tissue and to sign on to HR 1462. Fred Green and I had over forty-five minutes to review our objections The aide said that the congressman believes that abortion is unethical except (ectopic and spontaneous) and that is why the new language to prevent use of fetal tissue was added. I asked if the congressman was also opposed to organ transplants. The answer was no. I asked if it made a difference if the organ came from a murder victim or an accidental death. Again the answer was no. I asked then why the distinction between fetal organs/tissue and organs from "adult" sources? The answer was again the belief that abortion is unethical. At this point I shared my own pro-life views and how they did not conflict with the use of fetal tissue to save lives. I feel that the Research Freedom Act, which makes it a felony punishable by ten years in prison if fetal tissue is made available for profit or has any provisions that would designate who the beneficiary would be, is adequate. This legislation, I feel, protects the unborn and adequately addressed the concern that fetal tissue use would result in more abortions. I compared it to organ transplant use causing more murders. Not likely! On the issue of ethics, I challenged HR 3514 ethics by trying to make the Parkinson legislation and abortion issue. This completely misrepresents the intent of the bill and attempts to detract from the benefits that this bill is likely to generate. Each ten minute delay in getting the Parkinson legislation passed will see one American stricken by Parkinson's. To me this was an ethical consequence that needed reconsideration by the congressman. Fetal tissue transplant doesn't contribute to abortions any more than organ transplant contributes to murder. Lets get on with our Parkinsons work and let the pro-life movement focus on the events that lead to abortion. One final request by the aide to gain support for HR 3514 was that only 4 % of the HR1462 was likely to support fetal tissue research. Could we forego that for the other 96% and at the same time recognize the congressman's concern. While acknowledging that I am not learned in the pyramiding value of fetal research, I told the aide that I would be opposed to tying a scientists hands because if the 4% was a foundational platform that allowed the 96% to succeed, such a restriction could have severe detrimental consequences to the 96% finding the cure. Therefore I could not support such a request. There were at least 20 other visits that I participated in. All had their moments but these two were memorable for me. As many have already pointed out since our return home, there is still much work to be done to get the Udall Bill passed and even more to find the cure. Lets continue to be "Invisible No More". [log in to unmask]