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First of all, I want to tell all of you how encouraged I am with the activity evidenced recently on the listserve. Since House "mark-up" is expected to begin in June, it couldn't come at a better time. Let's keep the heat on them. I have just returned from the Fourth Annual National Conference for NPF Center of Excellence Coordinators and Parkinson Outreach Program Affiliates held this year in Las Vegas. I was invited to attend by the NPF's VERY ABLE National Director of Patient Services, Susan C. Imke, R.N., M.S.,. She asked me to speak briefly to the more than one hundred attendees about our advocacy efforts to date in seeking funding for the Udall Act, legislative priorities, and what they could do to help. Not only was it a great opportunity to meet some of the most dedicated Parkinson health professionals from the United States and Canada, but it also gave me the chance to significantly increase our advocacy network in each of the key constituencies that members of the House and Senate Labor HHS Appropriations Subcommittees represent in Washington. I drafted up and gave each coordinator from the key districts a copy of a personalized petition to each of the 29 House and Senate appropriators that we are targeting. I have attached a sample of one of them. The Honorable Arlen Specter United States Senate Washington, DC 20510 Dear Senator Specter: Following last year's enactment of the Morris K. Udall Parkinson's Research Act, authorizing up to $100 million in medical research "focussed" on Parkinson's disease, Congress, and more specifically, the Labor, Health, Human Services Education and Related Agencies Appropriations Subcommittee on which you serve, has a truly historic opportunity. You have the opportunity to right years of disproportionately conservative rate increases that direct Parkinson's research has received from the National Institutes of Health. Despite the continuous commitment demonstrated annually by your subcommittee to increase the TOTAL federal investment in biomedical research through NIH, meritorious direct Parkinson's research grants continue to be grossly under-funded. All of this, despite overwhelming scientific consensus that Parkinson's holds one of the highest potentials for an historic breakthrough. We recognize that some of your fellow appropriators have expressed reservations about disease-specific earmarking. The irony is, however, that by providing block grants to avoid political meddling in scientific decisions, NIH's inter-Institute funding priorities, which are often bureaucratic and political themselves, continue to overlook promising research (like Parkinson's) regardless of scientific merit. That is why it is necessary for Congress, and you, to intervene. We, your constituents all, have signed this petition to urge you in your upcoming deliberations of funding levels for the National Institutes of Health, to add your strong voice to efforts to ensure a Parkinson's specific appropriation sufficient to fully fund the Udall Act in your subcommittee's FY'99 spending measure. NAME ADDRESS CITY STATE ZIP As the petition indicates, they are to be signed by the member's constituents, and hopefully will be presented personally to each member during congressional visits planned for the upcoming PAN Forum. We are hoping for a great response. I will try to keep you all up to date on our progress in these key areas. I would like to thank Susan for inviting me to participate, and for giving US ALL an incredible opportunity to increase our organizational advocacy network in these crucial areas, and all over the country. I think we can all agree that the more organized we are, the stronger our voice. I would also like to thank the NPF/COE and POP Coordinators that were gracious enough to take on the responsibility of distributing the petitions for signatures. Without their help, this targeted effort would not have been possible. If you have any questions of me about the conference, the petitions, or anything else for that matter, you can always give me a call in Washington at 1-888-331-4673 or contact me personally over e-mail. Thanks, and let's keep up the good work! Bill Turenne, Jr. NPF/ Washington