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Ivan sign me on Janice 51/1+ -----Original Message----- From: Ivan M Suzman <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Saturday, November 28, 1998 10:36 PM Subject: PLEASE SIGN ON if YOU can be on TV >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. >