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^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 50/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 23 SNOWING deg. F :-) ******************************************************************** Hello PIE-net, What is to be done when an internationally-admired PD Foundation attacks a PWP continuously for 5 years, accuses the PWP of "slander",and NOW, goes and hides? Unfortunately, the National Parkinson's Foundation is NOT helping matters by suggesting ON THE INTERNET that I have somehow SLANDERED it (see letter below), in my effort to get reimbursed for my savings used for a 1994 trip to see one of their clinic doctors, who edited the NPF Report at that time, but who did not show up for my confirmed appointment in their building, after I had travelled 1300 miles each way, from MAINE to MIAMI, with a CNA. who took care of me. I think that there is a solution. I am wondering if someone close to an extraordinary human being, courageous Olympic flame-lighter, Mr. Muhamad Ali, who is a personal hero to me, and like me, a brother against the VietNam war, as well as a suffering PWP, has to be called; I KNOW that he could get this whole matter RESOLVED. But why should he have to be distracted from his difficult struggle against PD? Is that the step to take to end the NPF's attack on me? Have the NPF officers forgottfen that it was my telephone calls that brought Archbiship TUTU, by the grace of God, into our midst, and that he issued his prayer for us because God gave me the strength to work with him, his staff and Barbara Patterson? I will be praying today that ,by the time I sing in the Martin Luther King Gospel Extravaganza tonight,having been our local MLK Committee Co-Chair in 1985-86, that my six-year struggle with the NPF will END. Can SOMEONE get this letter to Mr. Ali's office at home, PLEASE?? I do not yet have direct contact with him by e-mail. Here is my new letter: +++++++++++++++++++++++++++++^^^^^^^^^++++++++++++++++++++ Dear Nathan Slewett, Larry Hoffheimer, and the NPF upper echelons. And PIEN subscribers (Parkinson's International Exchange List): Where do we all go now, as Dr. King said, community or chaos?? Please forgive me, list-founder Barbara Patterson, for I must not hold back the truth of this matter . If I am silent, someone else could suffer as I am. This NPF fiasco involves, now, Simon Coles' marvellous Parkinson List archives. And for friends and angry PIE-netters, folllow Hans van Genugten's advice; please use the delete button if you are not interested it what follows. A very low-income PWP made a long trip to the NPF Clinic for an appointment in 1994.No doctor appeared. We waited 3 hours in all. Financially, this still hurts.very badly. This PWP needs reimbursement for $2250.00, and kinder treatment. I am that injured, "welfare-case" PWP, whose NPF appointment was abandoned. There has been NO contact from Florida, from the NPF to me. NO outreach. No effort to help solve the mess that I will never forgive, until justice is done.The NPF is trying to ignore me. I have JUST a few days ago uncovered, however, having for the first time ever gone to Simon Cole's wonderful PD archives, that all of the world can read about the NPF's position, in what Melinda Brown called, "Ivan's Slander." Her post was "hidden" to me until I found it last week, at Simon Coles' PD Archives website. It was written in January, 1999, just about a year ago. She WAS the National Parkinson Foundation's Public Relations officer until MARCH , 1999. Then it seems that Melinda was er, um, fired?? Took another position elsewhere? Got out of the devil's den?? Took the heat, to save face for the NPF? Sorry, I can't help feeling a little harsh after so much pain. She was not even employed at NPF, 'til several YEARS AFTER the 1994 fiasco. She therefore was following orders and had NO first-hand knowledge. . Unless she was on Jules Verne's time machine???? I'm sure that if YOU received $8000/year in social security, and your savings were gone, and the NPF did this to YOU, you would not just sit around , and accept the loss. You'd think that the NPF would have better things to do than attack PWP's.But no, they just waste time attacking my reputation and my character. Really, Mr.Nathan Slewett and Mr. Larry Hoffheimer, I am not the villlain that the NPF makes me out to be. I have tried to help many, many people who are my fellow PWP's, Including some in Florida. SO PLEASE, stop hiding away like nothing has happened! THE NPF's official line is that Doctor Sanchez-Ramos never was working for the NPF.The NPF says that the doctors at NPF are not employed by the NPF, at the PD clinic in the NPF's clinic building, but they are all UMiami , not NPF doctors. At least, in 1994. This includes the secretaries, then, too. The NPF says that the UMiami rented out the space from the NPF, so it paid for the space for its doctors and secretaries. SO, the NPF says the Univ of MIami is responsible! But UMIAMI says, no, go away. Go back to the NPF! NOW PEOPLE, WAIT A MINUTE! What does the doctor say? Apologetically, he says it was a secretarial error. But the NPF (Julian Pearason) confirmed the appointment that very day. Twice by phone to the nearby Day's Inn, where we had a room. Was it the doctor's fault? The secretaries? The administrator's? The University? The NPF? No it was my fault, according to the NPF. (AAAAAAAAGGHHHHHHH sscream)!! DOUBLESPEAK! QUADRUPLESPEAK! All I know is that the NPF has the knowledge to straighten out this MESS. I don't . And I was wronged. The NPF position is untenable, manipulative and unacceptable. And insidious. And divides us. Until the NPF takes responsibility for what it is now publicly doing to me, it cannot say it is truly helping all PWP's. My vote goes to the PDF and PAN, and the APDA. I am not afraid of criticism because I know what happened, my hired CNA at that time ALSO knows, and God knows. Defiantly trying to get this mess RESOLVED. IVAN SUZMAN 50/39/36 just another PWP who feels like the mighty and the meek are battling again