^^^^^^WARM GREETINGS FROM^^^^^^^^^^
Ivan Suzman 48/11 [log in to unmask]
Portland, Maine land of lighthouses 87 deg. F steamy
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On Tue, 28 Jul 1998 05:32:10 -0500 Phil Tompkins <[log in to unmask]>
writes:
(SNIP)
"..... In addition, the Institute is urged to utilize all other available
>> mechanisms, as appropriate, including requests for applications,
>> program announcements, and extended funding of selected
>> investigators now working in the field, to further implement the
>> 1997 Morris K. Udall Parkinson's Research Act.
>What is meant by "further"? What has been implemented thus far?
>Phil Tompkins"
THANK YOU, PHIL!
As a heavily- suffering PWP, I am very anxious that the term "further
implement" is not specific enough to be understood.
SO-O, following Phil's lead, I need to KNOW:
1. Who would be the "selected investigators?"
2. What "working in the field" really means. Which "field?"
3. Is HR 4274 REALLY a commitment to the COORDINATED research
EARMARKED to curing Parkinson's......as SPECIFIED in Public Law 105-78,
Section 409B, paragraphs (b) (1), (b) (2) and (c) (1) and (2) (the
Morris K. Udall Parkinson's DIsease Research Act of 1997)?
4. Does "extended" mean $100,000,000.00 at 10 new Core Centers for
Parkinson's Research? Or is this only a vehicle for continuing, and
SLO-O-WLY expanding current research not truly specifically earmarked for
PD?
5. What are the titles of the grant applications that have been
funded so far?
6. I hope we are not talking about neurological work on the brain in
general, which might have a beneficial impact on curing Parkinson's, er,
um, maybe in the year 2017...two hundred unenlightened years after Dr.
James Parkinson's 1817 description of our still incurable malady!
7. All of these questions need to be discussed, debated and answered,
BEFORE the September floor debates occur in Washington. Although trying
to be hopeful, should I feel more than a little TERRIFIED that we might
spend another HORRIBLE year on the margins of Congress, faintly being
patronized by politicians, and eventually being left grossly underfunded?
8. Do we need a Plan B?? Could funding the Udall LAW be debated by
inserting an AMENDMENT on OTHER current bills in Washington? What if HR
4274 is undercut to the point where it hardly changes anything beyond a
cost-of-living increase?? Is it risky to have all our eggs in one
basket??
9 .I don't see that we PWP's have anything at all to lose by having
plan B--so that the Udall LAW has no chance of being left aside. PWA's
make LOTS of noise-and AIDS gets $2400 million per year. We
have to learn to be NOISIER, too, don't we??
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I believe that the idea that we 2 to 3 million PWP's in the USA,
whether diagnosed or not, are not getting what we deserve or need, is
still looming. Despite a slight feeling of hope, I sense that the NINDS
and NIH budgets could be used as a smoke screen to defer EARMARKED
Parkinson's funds.
Another year, another series of 9-1-1 calls, more suicides, more
exhaustion. Don't I have good reason to be scared?
I hope we don't have to ask our care givers to line us up in
wheelchairs and occupy doorways of Congresspersons. In this week alone,
I've heard( from two sources ) it took that level of disruption to get
the Americans with Disabilities Act passed!
I hope we can stop sizzling away in blistering Phoenix heat, or
walking out into snowstorms, and freezing to death in New Hampshire.
Ivan Suzman
Portland Maine 48/12
