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

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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.