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Please direct any questions, comments or requests to Michael Claeys, Community Outreach Coordinator, Parkinson's Action Network, by email at "[log in to unmask]" or by phone at (800) 850-4726. ----------------------------------------------------------------------- The President and the Parkinson's Gene As has been mentioned previously on the Listserve, during Tuesday's State of the Union address President Clinton referenced the discovery of a "Parkinson's gene" as an example of the remarkable progress and promise of medical research. The most important--and extremely positive--aspect of this is simply that the President mentioned Parkinson's in front of a national audience. Coming so soon after his historic signing of the Udall Act, Parkinson's does indeed have some momentum on Capitol Hill. It is still up to the Parkinson's community, however, to stoke and direct that momentum so that it results in suffecient research funding and other tangible improvements in federal policy. As noted above, the President's mention of Parkinson's is undeniably positive, but we should ignore neither the content nor implication of his remarks. The Parkinson's gene (or, more accurately, gene defect) he refered to has only been identified as being present in one family line with a high incidence of Parkinson's. There remains disagreement within the scientific community with regard to the possible causal role of this particular gene defect, and about what implications this discovery has for the overall Parkinson's-affected population. Add to this the fact that some viewers may have inferred from the President's remarks that Parkinson's has been "cured," or that identification of the gene has made additional research less of a pressing need. (Sensing this, I conducted a very informal poll among friends and associates unfamiliar with Parkinson's. I found a large percentage of people did in fact think the President had implied that significant strides have been made against Parkinson's.) In mentioning these things I am in no way criticizing the President. My point is that as a community we need to understand all the implications--positive and otherwise--of attention directed to our cause. On Wednesday, February 4th, Joan Samuelson and Jim Cordy will each make five minute presentations before the House Labor/HHS Appropriations Subcommittee--the House panel with direct jurisdiction over medical research funding. After consultation with research and political experts, Joan's testimony will expand and clarify the President's statement, put the gene discovery into the proper context of the overall Parkinson's research effort and reiterate the critical need for full funding of the Udall Act. Joan's (and I am sure Jim's) testimony will be made available on this Listserve. And we need to keep the pressure on. Today (Thursday) Vice President Al Gore announced on behalf of the President "the single largest increase for cancer research in history"--a $4.7 billion increase over the next five years. That's a 65% increase in five years. $4.7 billion. By way of perspective, full funding of the Udall Act requires an increase of about $64 million. The President's fiscal year 1999 budget will be released February 2nd. Obviously, we will scour it for all medical research initiatives and funding levels. There is a tremendous amount of work to be done this year. The Parkinson's community has accomplished much, and to keep the momentum going we need to be more organized, better informed and more diligent than ever. Please direct any questions, comments or requests to Michael Claeys, Community Outreach Coordinator, by email at "[log in to unmask]" or by phone at (800) 850-4726.