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To Barbara Patterson, Listserve, Please repost these 4 important messages from PAN even though they may have been posted already. 3 people have contacted me saying they are missing different parts. Sorry for the inconvenience. Barbara Schirloff Cost Initiative Continues: Fill out a Cost Evaluation Form... One of the Parkinson's community's most compelling arguments for research funding is cost: without an effective treatment, Parkinson's disability creates a fiscal nightmare. This year we are putting renewed emphasis on gathering substantive and detailed information about the true cost of Parkinson's disease. We have Cost Evaluation Forms available to help categorize the various medical costs, as well as the related societal costs of lost wages and productivity. While the cost of Parkinson's is most often stated as $25 BILLION, the initial responses to our forms indicate the true costs as close to $50 Billion. We need more complete data in order to make the strongest possible case to Congress. If you haven't completed and returned a Cost Evaluation form, please do so as soon as possible. Moreover, organizing your support group to do the same would greatly assist our efforts. If you are a physician or support group leader, please call our office to receive forms and distribute them to your members. This information will help us all in the effort to demonstrate that Parkinson's deserves more research funding. * Visit our NEW WEB SITE! In our next step to establishing a coordinated, informative and responsive Internet presence, we are launching our own interactive site on the World Wide Web! The site will be accessible January 1,1996 at http://www.pdaction.org At start up it will contain useful information about Parkinson's disease, PAN and the Udall bill, including electronic copies of our Action Advisories. You will also be able to email us, sign on to our mailing list, or visit other Parkinson's-related sites via hyperlinks. In the coming months we will be adding comprehensive Congressional information, electronic copies of our newsletters and various scientific and media articles. http://www.pdaction.org Please visit our site, make use of the information and services provided and contact us with your comments or suggestions. 800-850-4726 * Resources- As you get started, you may need an updated set of materials. Following are some of the resources that you may use for your advocacy efforts. Contact PAN's Community Outreach Coordinator Michael Claeys, at 800-850-4726, for copies. -Lists of newly elected and re-elected Members of the 105th congress. -Current Members of the House and Senate Leadership. -Members of the key Congressional committees and their committee chairs and ranking Members. -Video of Senate hearing on medical Research, inspirational videos, and national media articles. -Other updated PAN materials, including Funding Disparity Charts, Routes to a Parkinson's Cure, Return on Investment in Parkinson's Research, Udall bill summaries and Fetal Tissue Research Fact Sheets. * The November issue of the Action Advisory gives a thorough status report and analysis of the Parkinson's community's legislative effort, including: -Recap of the Udall bill progress leading up to unanimous Senate passage. -A "Q & A" analysis of what we've accomplished, and what it indicates for future strategy. -Highlights of Parkinson's research appropriations, including the NIH neurodegenerative initiative, budgets and Congressional "report language" directives to the National Institutes for Neurological Disorders and Stroke (NINDS) and Environmental Health Sciences(NIEHS) and the Department of Veterans Affairs. If you or your support group would like copies, please call us at 800-850-4726. Parkinson's Action Network 800-850-4726 Headquarters: 818 College Ave., Suite C Santa Rosa, CA 95404 phone 707-544-1994 fax 707-544-2363 email: [log in to unmask] Washington, DC office 601 13th St. NW., Suite 310 Washington, DC 20005 phone 202-628-2079 fax 202-628-2077 Brad Udall, Chair Joan I. Samuelson, President John L. Dodge, Treasurer Bonnie K. Mioduchoski, Administrator Michael Claeys, Community Coordinator The Action Reporter is a free publication of the Parkinson's Action Network, a non-profit charitable foundation for a cure for Parkinson's. Use of this material in other publications is welcomed. We ask that the Network be identified as the source of the material, and notified how, when and where the material is used. Simply call 800-850-4726