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Ivan, Of course I'll sign hour list. You know I agree whole-heartedly with your idea of publicizing ourselves, of making our own stories known. It makes sense. Even if we have lost some of our communication skills, we are still articulate enough to tell our own stories, so that the public can learn first hand the truth about PD and the urgency that governs our need for a cure. That's a point that has almost been overlooked in the flurry of attention paid to Michael J Fox. Se still need those elusive Udall funds to promote the resea rch that should find the cure!And our time is running out. So we'd better get out there and say so! Some of us have already been on TV - a few names that spring to mind are: Terri WHitling, Jm Finn, Jim Cordy, and Ivan of course, and if you can count Biddesford local public access tv, even li' ole me. What about Brig and Gerri Haines - youtt/r video wasso wonderful - shouldn't the whole country be seeing it, and maybe have the opportunity of see an interview with you two - I think you are much more representative of a'normal' yopper than MJF.Bill Hrrison, I'm hoping to see your name on the list. And caregivers too - how about it Camilla and Ken, and a host of others. You have been so intimately involved with the illness for so long - you too could be wonderful spokespersons on TV. I cant begin to list all the valuable people whose post I read avidly every day, knowing that I'll learn something new each time - all of you dign up too. Then you can say your piece where ot might do some good, instead of preaching to the converted here on the list. So come on, stand up and be counted Hilary Blue(49,25,16) --------------------------------------------------------------------------------------------------------------------------- Ivan M Suzman wrote: > > Dear friends on the World Parkinson's Exchange List, > > I have been following the discussion on our World List about Michael J. > Fox. His courage is an enormous opportunity in the battle for both > publicity and research funds about Parkinson's, whether "young onset" or > not. For a moment, allow me to shift the focus to the rest of us who live > daily with this dreadful disease. > > I suggest that each Listmember immediately decide whether, if called, > he or she could appear on live TV, or be taped for broadcast on TV. > BOLD LEADERSHIP is needed from the ranks of PWP's and their CG's (Persons > with Parkinson's and their CareGivers) to increase our visibility. > > If you are available, PLEASE SIGN ON to the list BELOW. PLEASE > post your reply.. > > I would emphasize that the $100,000,000.00 annual research spending > authorized by the 1997 Udall Act remains UNFUNDED. Projected spending at > the NIH, despite all of our work, only rose from $34.4 million to $37.4 > million between fiscal year 1997 and the current fiscal year 1999, > according to the Parkinson's Action Reporter, vol. ix, no.4, November, > 1998, p.1, "Udall Spending Gap Continues." This is TERRIBLE news. > > I am "sponsoring" this listing, below, of TV-available PWP's and CG's > . Please add your name, i.d., and address, if you are willing to either > be seen live or be taped for broadcast on TV.. WE MUST BE VISIBLE,and > join with Mr. Fox. Our stories must be heard. > > It follows that Susan Reese's appearance in New York City, on the > Today Show, on Monday, November 30, at 8:00 AM, would be enhanced if it > were to include one or more PWP's or CG's. OUR faces must be televised. > Let's get the leading organizations and the general public talking about > our own appearances on TV. > > WE are the most knowledgeable people to explain the horrors and the > hopes of living with Parkinson's Disease. WE can provide so much > information and education as advocates for the research to cure PD. > > PLEASE sign on to the list below: > > LIST OF PWP'S AND CG'S WILLING TO APPEAR ON TV/ BE TAPED FOR > BROADCAST > > NAME I.D. Address Country > PWP or CG e-mail address > > 1. Ivan Suzman 49/39/36 Portland, Maine USA > pwp [log in to unmask] > 2. > 3. > 4. > 5. > 6. > 7. > 8. > 9. > 10. > 11. > 12. > 13. > 14. > 15. > 16. > 17. > 18. > 19. > 20. > ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) > Ivan Suzman 49/39/36 [log in to unmask] :-) > Portland, Maine land of lighthouses 38 deg. F :-) > ******************************************************************** > > >We also spoke a little about the issues arising from MJF going public, > >especial how they affect YOPDs, and how the MJF publicity is painting > >too rosy > >a picture - but we agreed that increased public awareness can only > >stimulate > >more interest in finding a cure. And she said that she could not say > >in > >advance exactly what she would say on Monday but would have to be > >guided by > >what questions she was asked - but that she would always have our > >interests at > >heart. And that she would try and get as much into her 4 minutes as > >possible. > >Lets hope that she is successful. > >Good Luck, Susan!! > > > >Hilary Blue (49,25,16) > > >Hilary Blue wrote: > >>>> [log in to unmask] wrote: > > >> > Susan Reese, RN, LCSW-- Director of the American Parkinson's > >Disease > >> > Association's Young PD Information & Referral Center will be > >interviewed on > >> > the Today Show, Monday, November 30 about young-onset PD and the > >APDA Center > >> > created specifically to address the needs of the young person with > >PD.