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I recently met somebody who works for one of the advocacy groups in Washington DC, where her job is (believe it or not_) to keep things OUT OF the news media. Well, as publicity is her field, I asked her what we were doing wrong. First of all, she confessed she had never heard of Archbishop Tutu and had no idea of who he was or what he was famous for - which may be indicative of why we elicited no response (!) but more importantly, she said we were not doing anything wrong , we were on the right track, we just HADNT DONE ENOUGH! That we should have frequent press releases., for every little event and occurrence relating to PD, so that it is constantly in the eye of the news media, And that we should get some celebrity - she mentioned Michael J Fox ( him she had heard of) to speak out on our behalf. And she assumed we had a full time press officer - does any of the PD organisations have a press officer on its exec? Hilary Blue ********************************************************************** Ivan M Suzman wrote: > > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) > Ivan Suzman 49/39/36 [log in to unmask] :-) > Portland, Maine land of lighthouses 39 deg. F :-) > ******************************************************************** > I am DISGUSTED that the Tutu-PD story has been ignored > by the major media! But I am NOT surprised. > > As an anthropologist, I wish to record the observation here > that, as far as I am aware, we listmembers contacted more than 1000 > media worldwide. Killings in Yugoslavia get banner headlines, > but as far as I am aware, NO phone calls, ZERO, have come to > either Archbishop Tutu's offices, or to my house, to cover > the story of his powerful and wonderful response to our > pleas for his support. I believe Barb Patterson had the > only radio interview, but it brushed aside the Tutu story. > > We simply are NOT on the agenda of the media, > unless we are convenient "filler" material. I wonder > if we could change that with a press conference, > BLASTING the major media. Or we send a delegation > in wheelchairs to block the doors of the NIH Director. > > It was actions like this that made AIDS an "agenda > item." Is PROTEST, rather than persuasiveness, the > only way to get the attention we deserve? > > I personally believe that we can, and we > should, add the element of a protest, an outcry, > at this time. > > Locally, in Maine, a tiny black-owned and edited > bimonthly, The Bridge, right here in Portland, IS about > to print the Tutu-PD story. But ALL of the TV and > radio and newspapers have ignored it. > > The African-American editor of the Bridge hopes to publish > by the end of this month. We served as two of Portland's > three co-chairpersons on the Martin Luther King > Holiday Committee in 1986. > > There are so many obstacles for PWP's to gain > access to the media. I would have thought a Nobel > Laureate and WORLD figure like Archbishop Tutu > would be interviewed, even if little Ivan doesn't seem > to matter to them. > > And where have Mr. Fox and his publicity gotten > us? When Robin Elliot relays that NOBODY from > our community is on the NIH council, what IS the > message we should derive? > > For me, now starting to deteriorate, in my 14th > year of Young Onset PD, or YOPD + something > unknown, I can only say that it is my near collapse > last Friday and my continuing vulnerability that push > me to say that, > > although we have come a long, long, way, > there are still HUGE obstacles in our paths, and > only the brave and spiritually strong will > help us along to reach our "mountaintop," > that is, the CURE for this wretched disease! > > Ivan Suzman > Portland, Maine