Ivan...
I sure agree with ya about the need for us Parkies to be seen AND heard in the
media. And I believe it's most important to aim TONS of those messages at
the younger-than-112-years-old-crowd!
Let my fellow "Boomers," and the "Generation-X" bunch know that Parkinson's
is NOT an "old person's disease" any longer. It's time to make the millions
of people UNDER 50 know that LOTS of folks in THEIR age group are getting hit
with Parkinson's and will stand a chance of having it for the better part of
half their life-time if a cure isn't found.
Unfortunately, we're still all too invisible!
Barb Mallut
[log in to unmask]
----------
From: Parkinson's Information Exchange on behalf of Ivan M Suzman
Sent: Sunday, November 23, 1997 1:11 PM
To: Multiple recipients of list PARKINSN
Subject: PWP Congress?Research, TV Ads, Financial Aid
^^^^^^GREETINGS FROM^^^^^^^^^^
Ivan Suzman 47/10 [log in to unmask]
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
On Sun, 23 Nov 1997 10:07:44 -0500 Kathy Kunz <[log in to unmask]> 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
>
