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Ivan and list friends As my condition deteriorates I feel much the same as Ivan TIME is passing---- HOW can we make ourselves visible!! Anne Rutherford Newfoundland=20 On Fri, 26 Jun 1998, Ivan M Suzman wrote: > Dear Paul Smedberg, >=20 > I want to thank you publicly for something you've done-even if it makes > me frightened. >=20 > Thank you for your clear explanation (reposted below) about the House > Appropriations Committee's NIH funding proposal, and how this is entirely > different from funding the Udall Act. As I sit and absorb what you have > posted about the NIH appropriations proposal in the House sub-committee, > I feel VERY scared. >=20 > If you are young,and your body is deteriorating from PD, maybe you > could understand how I feel, after 12 years of increasing difficulties > just surviving from one hour to the next.. I still feel that we who see > suicide, depression, exhaustion and isolation among us have got to PUSH > for a National Day of Udall Visibility. I still think it should be > Friday July 3. I still adhere to the idea that we distribute a leaflet or > flyer, and get more signatures from people who support the Udall Act's > full, unconditional funding. >=20 > I wish that Joan Samuelson of the PAN, Robin Elliot of the PDF, Larry > Hoffheimer of the NPF and Paul Smedberg of the APDA would come out with a > flyer that PWP's could distribute nationwide, either at Post Offices or > at supermarkets. It's time that the information we PWP's get is > consistent and UNIFIED. It could happen if we PWP's held back some of our > financial support until they COLLABORATE. >=20 > Or maybe, through the List, someone could post a first-draft, and it > could be edited and touched-up on our screens until we Listmembers had a > flyer suitable for distribution. Anyone want to go ahead and try? The > point is, HOW LONG DO WE HAVE TO WAIT FOR THE UDALL ACT TO BE FUNDED?? >=20 > I know this sounds uncharitable, but you have to understand what's > happening to ME. I am getting sicker. I am not really feeling at all > well, and it would be untruthful if I were to say that lobbying to accept > a 9.2% increase in NIH funds that do NOT contain Parkinson's-earmarked > Udall funding is acceptable strategy. It is NOT. >=20 > And by the way, I am one of those poorer people whose Fuel Assistance > would be WIPED OUT by this NIH-appropriations proposal. SO, I oppose the > damn thing-it reeks of politics--and the Udall Act isn't guaranteed at > all by this approach. >=20 > Paul Smedberg has done us all a service by telling us the harsh reality > we are up against. It is not pretty. And the FOCUS should be on the > Udall ACT, and NOT on the NIH appropriations "mark-ups" that might really > mean a total loss of Udall funding. >=20 > Ivan Suzman 48/12 > Portland >=20 > ^^^^^^WARM GREETINGS FROM^^^^^^^^^^ > Ivan Suzman 48/11 [log in to unmask] > Portland, Maine land of lighthouses 61 deg. F rainy > *********************************************************** >=20 > On Thu, 25 Jun 1998 15:11:27 -0400 "The American Parkinson Disease > Association, Inc." <[log in to unmask]> writes: > >25 June 1998 > > > >American Parkinson Disease Association > >Washington, D.C. Office > >800-684-2732 > > > >We have received several calls regarding the June 23, 1998, mark-up of > >the > >Labor, HHS & Education Appropriations Bill by the House Appropriations > >Sub-Committee on Labor, HHS & Education. Congressman John Porter > >(R-IL) > >chairs the sub-committee. > > > >Specifically, the questions focused on the sub-committee > >recommendation to > >increase the National Institutes of Health (NIH) budget by 9 percent > >or > >approximately $1.2 billion and what this means for the Udall Act. > >While the > >recommendation for a 9 percent increase in medical research at the NIH > >is > >significant that does not mean Parkinson=92s research received any > >specific > >(or designated) increase despite the passage of the Udall Bill. Dr. > >Varmus, > >in an analysis report, did state however that much of the increase > >would > >likely go into two especially fast-moving areas: "genetic medicine and > >neuroscience, which promises insights into Parkinson=92s and Alzheimer= =92s > >and > >various psychiatric syndromes". Again, while the words may seem > >encouraging > >this does not mean Parkinson=92s research will receive a specific > >increase in > >research funding. > > > >I talked to sub-committee staff members yesterday and they confirmed > >that > >the "significant language" of the bill did not specifically mention > >Parkinson=92s research. There is, of course, a possibility that once > >the > >detailed bill is made public we may find some reference to the need > >for > >increased attention on Parkinson=92s research at the NIH. > > > >The House Labor, HHS & Education Appropriations Bill is now sent to > >the full > >Appropriations Committee for consideration where further chances will > >likely > >be made. The House is currently scheduled to bring debate on the bill > >after > >the July 4th recess. > > > >Several people have also asked =96 "What about the Senate?" The Senate > >Appropriations Sub-Committee on Labor, HHS & Education will mark-up > >their > >version of the bill on (or around) July 7, 1998. Many of our > >congressional > >supporters believe that the Senate is more likely to take action on > >the > >Udall Act. This basically leaves us one week to influence the Senate > >Appropriations Sub-Committee on Labor, HHS & Education chaired by > >Senator > >Arlen Specter (R-PA). The message is still the same =96 fully fund the > >Udall > >Act. > > > >We have to stay focused =96 we did it last year we can do it again. > >There is > >a lot of support for the Udall Act because you have made your voice > >heard. > >Congressional support for the Udall Act is also strengthened by the > >scientific potential for significant advancements in Parkinson=92s > >research > >and effective treatments. > > > >Should you have any questions, need assistance with your advocacy > >efforts, > >want to confirm facts or need help with follow-up with a congressional > >office please call Paul Smedberg, APDA Washington, D.C. Office at > >800-684-2732 or via e-mail at [log in to unmask] > > >=20