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Date: Tue, 14 Jul 1998 11:59:45 -0700 From: "Parkinson's Action Network" <[log in to unmask]> Reply-To: [log in to unmask] Parkinson's Action Network Subject: Listserve Post Please refer all questions and comments to Michael Claeys, Community Outreach Coordinator for the Parkinson's Action Network, (800) 850-4726." > From: Barbara Mallut <[log in to unmask]> > Subject: Re: WHAT happens if it doesn't work? > To "All.." > A question: What happens in three years if the Udall Bill STILL hasn't yet > been funded? (heaven forbid it should take that long.... but "what if?") > Barb Mallut > [log in to unmask] The answer is that we will fight to reauthorize the Udall Act for another three to five years, and then fight for the highest possible appropriation each and every year to ensure that Parkinson's researchers have the resources available to them to deliver the best treatment and pursue the cure. One thing we all have to keep in mind is that funding for the Udall Act is not necessarily an "all or nothing" proposition -- it is a dynamic and fluid process requiring both a constant focus on our ultimate goal and continual minor adjustments to the changes in the immediate political environment. When the Udall bill was first introduced in 1994 the NIH was spending $26 million on direct Parkinson's research. Through the combined and prolonged efforts of professional advocates, federal lawmakers and staff, researchers and an ever-growing body of grassroots activists, the Parkinson's community has made steady progress on a variety of important fronts. Has the progress been as far-reaching or as fast as we would like? Of course not. But make no mistake, the progress of the Parkinson's community is real, tangible, quite dramatic and NOT in danger of being lost or relinquished. In terms of research funding, by 1997 direct Parkinson's research had risen to $35 million. In 1998 it is estimated to be $41 million, and NIH estimates the level to be at $45 million in 1999. This is not the funding authorized by the Udall Act -- but this rate of increase (nearly doubling in less than five years) would not have occured without the nationwide effort to pass Udall. Every effort is currently being made to ensure that the Udall Act will be fully funded in 1999, but even if it is not fully funded there will be a quantifiable increase in direct Parkinson's research funding -- an increase brought about by the advocacy efforts of the Parkinson's community. And the momentum is growing. The only defeat would be to give up -- and that is simply not a possibility. It is also important to remember that the advocacy effort focused on the Udall Act has produced results in other areas. Motivated by the research potential and the dedication of Parkinson's activists, several influencial Members of Congress have succeeded in dedicating a total of nearly $75 million for Parkinson's research funding -- close to $25 million per year for fiscal years 1997 through 1999 -- in the Department of Defence (DoD) budgets. The first of the grants to be funded under this program (money appropriated for fiscal year 1997) were initiated earlier this year, and the DoD is now requesting applications for grants to be funded with the 1998 appropriation. Another $25 million is expected to be included in the fiscal year 1999 DoD appropriations bill which will be passed later this year. This is a very significant development. It has further energized the Parkinson's research community, and the indications are that the money is going for very promising research projects. We at PAN encourage every member of the Parkinson's community to redouble the strong advocacy efforts that have gotten us this far. Yes there is more work to be done, and of course there will be twists and turns along the way, but our progress is undeniable and our potential has never been better. Please refer all questions and comments to Michael Claeys, Community Outreach Coordinator for the Parkinson's Action Network, (800) 850-4726."