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The following is a message from Michael Claeys, Community Outreach Coordinator for the Parkinson's Action Network: please reply to [log in to unmask] On December 24, Ken Aidekman wrote the message below regarding the recent NINDS Request For Application regarding five new Parkinson's Centers of Excellence: >>Interestingly, the (NIH) RFA does not mention the Udall Bill. Instead >there are a few sentences which say that it is related to the >priority given to chronic disabling conditions under the Public >Health Service program "Healthy People 2000," which has been in place >for several years. Can anyone explain this?<< >I don't have an answer but one might surmise that the NIH is not interested >in going out of its way to acknowledge a law that earmarks funding for a >specific disease. They have fought earmarking all along and will continue >to fight it. >Nonetheless, the NIH is very well aware of the Udall bill and pressure in >Congress regarding PD research as evidenced by >> in recognition of >continuing Congressional interest to intensify and to expand basic and >clinical research in Parkinson's Disease..."<< They are listening and >reacting positively while maintaining a stance of impartiality. >Despite the failure of Congress to appropriate a specific dollar amount to >PD research, we can take pride in the fact that a four year long effort by >grassroots individuals and our professional advocates has produced real >results. Had it not been for the Udall Bill there would have been no >initiative to fund Centers of Excellence nor would there be acknowledgment >of >>...recent research progress and opportunity<< We may not be getting >all we want but we are making progress. >In the coming year it may be tougher for us to keep up the momentum without >a drive to pass a specific bill or to appropriate the funds that the bill >calls for. Certainly, now is a good time to contact newly elected >representatives who need to be educated about PD and the need for increased >research. Ken is absolutely correct -- the eight Parkinson's Centers are the direct result of the Parkinson's community's advocacy campaign and the increased Congressional interest that campaign has inspired. The NIH will likely testify to Congress that these Centers are evidence of the NIH's "rigorous" Parkinson's research agenda, and thereby continue to resist implementation of the Udall Act. While the Parkinson's community must continue to aggressively campaign for full funding of the Udall Act, it is important to recognize that the advocacy efforts are producing the desired results: more money for Parkinson's researchers. It may not be as much or as soon as we'd all prefer, but the hard work is paying off. That is something everyone in the Parkinson's community should take pride in and draw inspiration from. The only point I where I would differ with Ken is his suggestion that it may be difficult to maintain momentum in the coming year. Even considering the distraction caused by ongoing impeachment proceedings, there are quite a few reasons to expect considerable Congressional action relating to Parkinson's research. The biggest priority of the Spring likely will be requesting Congressional oversight hearings on the current NIH Parkinson's research program. There are several committees with the jurisdiction to hold such hearings, and information will be forthcoming about the progress of hearing requests. Another ongoing effort will be further scientific analysis of the individual grant awards that make up the NIH's Parkinson's program for fiscal year 1998. Congressman Fred Upton (R-MI) who got the FY97 list from NIH has already sent in the request for the FY98 list of grants and abstracts. These ongoing projects will assist in the overall effort to secure appropriations sufficient to fully fund the Udall Act in the FY2000 budget that Congress will approve in the fall of 1999. Of course this will continue to be the primary focal point for all advocacy efforts. The 1999 grassroots campaign will include a major petition drive. This drive will begin in January and conclude with an organized and publicized presentation of petitions during the 1999 Public Policy Forum in the Summer of 1999. Once again this year, the Forum will focus a concentrated direct lobbying effort in the offices of the most influential Members of Congress. contd. in Parkinson's Action Network-NINDS part 2of2 These are some of the major planned events and programs for 1999 -- and more information about each of them will be forthcoming in the new year. What cannot be predicted, however, is the increased interest in Parkinson's generated by scientific breakthroughs (remember that "stem cell" research will be a hot topic on Capitol Hill in '99) and announcements like that of Michael J. Fox. Parkinson's may once again be thrust in the national spotlight at any time. The final thing I want to mention will be the first thing to actually happen. We expect our Congressional champions to initiate a letter to NIH Director Harold Varmus reminding him of the strong report language passed with the FY99 budget and the continued Congressional interest in seeing an increased and more focused Parkinson's research program. We will be asking all interested Members of Congress to sign onto the letter, and that means early January will be the time to contact your Senators and Representatives. We expect the letter to be sent on or about January 19th -- one month before the NIH is expected to report to the House and Senate Appropriations Committees regarding their efforts to implement the directives included in the FY99 report language. Next week we will post a message describing this letter and the needed activities in greater detail. Any questions can be directed to the Parkinson's Action Network at (800) 850-4726. The Network wishes a happy New Year to the everyone in the Parkinson's Community. 1999 is sure to be another year of accomplishment if we all work together to achieve our common goals. All the best. Date: Wed, 30 Dec 1998 20:32:28 -0800 From: "Parkinson's Action Network" <[log in to unmask]> Reply-To: [log in to unmask] Organization: Parkinson's Action Network