Re: PWP Congress?Research, TV Ads, Financial Aid

[Fleurette Leonard <fleonard@xxxxxxxxxx>]

Ivan - Mohammed Ali will do PD commercials beginning soon as seen in an
interview on Extra - he and his wife were practising.  Flo



At 04:11 PM 11/23/97 -0500, you wrote:
>^^^^^^GREETINGS  FROM^^^^^^^^^^
>Ivan Suzman  47/10   cureit@xxxxxxxx
>Portland, Maine   land of lighthouses   26  deg. F  Snow, snow, snow, and
>more snow
>***********************************************************
>Dear Kathy, Charlie, and Listsubscribers,
>
>   It seems to me that PWP's and their caregivers should have more to say
>about the PRIORITIES for our future than any corporation like the NPF.
>
>   If we allow the NPF to lead us, we'll be divided into the pro-NPF's
>and the anti-NPF's.
>
>   Don't forget how the NPF has refused to give me $2200 to pay me back
>for the doctor's appointment that it set up for me and then abandoned.
>Heartless corporations can't help us.
>
>   I also think it is RESEARCH PRIORITIES we should be all commenting on.
>
>   For example, I think it is a better expenditure of the Udall Act
>moneys to focus on the genetic and biochemical causes of Parkinson's.
>Surgical research to me is secondary, because that seems like refining a
>band aid on PD, instead of understanding the root cause of PD.
>
>    HAS ANYONE SEEN the TV commercial to stop Epilepsy?  It shows a
>series of women, each one's eyes burning fiercely with the hope that
>their epilepsy can be cured.
>
>    It is VERY powerful.
>
>    How about PUBLICITY about Parkinson's?  A few well-made TV
>commercials, with close-ups of PWP's saying something like "Let's Find
>Out What Causes PD," like the Epilepsy commercial, could reach the public
>quickly and powerfully.
>
>     Imagine the impact on the public if TV commercials with we PWP's on
>them played when EVERYBODY watches TV: at the 6:00 News Hour.
>
>     And finally there ought to be FINANCIAL ASSISTANCE.  As a person
>with an annual income of $7900, due to being forced to survive on social
>security, and classified as "disabled," any medicine, procedure or
>therapeutic program is OUT OF REACH unless Medicaid has approved it.
>
>     SO I can think about and dream about the CURE, but it takes LOTS of
>us PWP's and Care-partners to be VOCAL to make a difference.
>
>Ivan Suzman
>
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>On Sun, 23 Nov 1997 10:07:44 -0500 Kathy Kunz <kathyok@xxxxxxx> writes:
>>Charlie--
>>
>>I'm not up on all the nuances of rivalries, affiliations, and turf
>>wars,
>>except what I read on the list, but that announcement also struck me
>>as
>>spoiling for trouble.  A true Patient's Congress should be as
>>unconnected
>>as possible to any current "player."  A steering committee meeting in
>>Miami?  Sure, it will be independent, right!  (not that a sunny clime
>>doesn't sound inviting in January; whenever I had to interview a
>>doctor for
>>an article over the holidays, he was always in Aruba for a
>>convention.)
>>
>>Any Congress steering committee should meet on neutral ground, funded
>>by
>>contributions from as wide a group as possible: PD
>>foundations/organizations, drug companies, grass roots PWP (I'd gladly
>>pop
>>for a truly independent meeting) so that no one entity predominates or
>>feels they can run the show.  I wish you were one of the twelve, with
>>your
>>common sense, the-emperor-has-no-clothes approach.
>>
>>Kathy Kunz
>>
>