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Dear Carole, Thank you very much for your query about who should be on the TV-ready list. The short answer to your question, Carole, is a cordial, but resounding NO. With this answer of "no," I am providing you with what I hope you will accept as a well-reasoned postion. When I started this TV-ready list, after checking my thoughts virtually all night long on the phone with pwp Hilary Blue of Virginia, and having appeared on area TV six times this year, my thought was to develop a publishable list of those pwp's and cg's who now feel, particularly with Mr. Fox's currency with network news, that they, too, are ready to appear on network or area TV, and be filmed while talking about living with Parkinson's. It is very important to us to speak for ourselves, in the environments in which we live, and put many visible faces of PD, out to the public. I think it is critical that we pwp's get as much TV exposure as possible, especially in the context of Mr. Michael J. Fox's courageous and admirable coming forth as a pwp. I also feel that we should be seen in a NON-CLINICAL setting, so that we are understood first and foremost as having lives integrated with the larger communities in which we live out our lives. The first PWP I saw on TV was Alan Bonander. I still get a shiver thinking about him. He was showing off his gorgeous pink roses to a TV interviewer. I grow beautiful California poppies, feathery varieties of cosmos, beautiful irises, and all kinds of day lilies. I treasure my gardening, so I connected immediately with Alan. He seemed so real, so touchable, not just a patient in front of another white-coated specialist! . Although Alan was dyskinetic, what mattered was that somehow, he had broken through the conventional wisdom that illness is ugly and not viewable. He was much larger than the PD that was affecting every moment of his life. He was so determined to beat it that I set out to create another image of a person who could show how PD can be beaten. I even joined a local chorus, and despite some visible tremors or occasional dyskinesia, continue to appear, though much less frequently, on the local stage. It is almost certain that any and all TV interviews of various pwp's and cg's, and their struggles with PD, will dramatically increase research attention and funding for an emerging, vibrant PD community. TV exposure of pwp's and their cg's should help to correct our miserably underfunded position. Noone can be a better advocate than a pwp with a cg, when it comes to appealing for a massive infusion of money needed to fund research that is truly critical to our lives, and those of the friends and families that surround us. Look at what Hollywood has done for AIDS research. Perhaps others in the Hollywood world in addition to Mr. Michael J. Fox will see that it is now safe for them to reveal their Parkinson's to the public. Tonight, Rita Weeks alludes to more Hollywood developments, in her message about TV in Nebraska. We who are suffering from PD certainly stand ready to embrace those who are ready to make the public realize that they, too, have PD. If I understand what you're asking, Carole, I personally feel that it is important, critically important, for the Institute to develop a similar, but a very separate list, of your various contact addresses for each of the researchers at the Institute willing to be televised, so that radio and TV stations can know how to get in touch with those working at, or in association with, the Institute. Media presence by your staff is of vital importance, too, but in a different way from that which pwp's and their cg's can provide to the tv-watching world. Carole, you know well, undoubtedly, some, or perhaps many of the pwp's who are being seen by your clinical and research staff. These pwp's might wish to place themselves on our list. You might like to encourage their participation. Although I do not feel that your staff members belong on the TV-ready pwp and cg list which is developing here on the World Parkinson's Exchange (English-language) List, I hope that you will freely comment on what I have said. Your continued support and interest in our TV-ready list is of great value and much appreciated by all of us. Thank you, Carole, for your invaluable advice and support. Ivan :-) ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) Ivan Suzman 49/39/36 [log in to unmask] :-) Portland, Maine land of lighthouses 43 deg. F :-)"balmy" night ******************************************************************** On Wed, 2 Dec 1998 13:02:43 -0800 "Cassidy, Carole" <[log in to unmask]> writes: >I probably missed something along the line, but I'm wondering how this >list >is going to be used and whether or not the 'listkeeper' is interested >in >adding the Parkinson's Institute info for reporters to contact >research and >clinical staff members. > >Carole Cassidy >