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Did anyone get this message? Does anyone want to comment? RSVP Thanks Ivan ^^^^^^WARM GREETINGS FROM^^^^^^^^^^ Ivan Suzman 48/11 [log in to unmask] Portland, Maine land of lighthouses 63 deg. F expecting 90 deg today *********************************************************** On Tue, 28 Jul 1998 14:18:02 -0400 Ivan M Suzman <[log in to unmask]> writes: >^^^^^^WARM GREETINGS FROM^^^^^^^^^^ >Ivan Suzman 48/11 [log in to unmask] >Portland, Maine land of lighthouses 87 deg. F steamy >*********************************************************** > >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?? > ******************* ************** >*************** >************** ******************** > 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 >