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I've signed on. Who will be next? Come on, we're all after the same goal - maximum media exposure. So lets do it together.! Hilary Blue -------------------------------------------------------------------------------------------------- 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.