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]
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^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses 38 deg. F :-)
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>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.
