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I think the 10 points Ivan raises are good starting points for internal discussion preparatory to media presentation. Here's my 2-cents worth of comments and questions. > 1) Reshaping perceptions of PWPs. This is the easiest issue to get in shape for presentation. What public perception do we want to achieve? There are many "typical PWPs", not one. While PD manifestations, severity, effects, and impact vary widely in degree, what is common is that this is a big league serious disease, it progresses relentlessly, medication is mostly palliative, surgery is not an option for most and neither drugs nor surgery provide a cure. After news presentation of MJ Fox, is age of PWP still a common misperception? There is a juvenile hereditary form of PD that needs coverage. > 2) Developing coordinated fund - raising EVENTS FOR cellular RESEARCH. This is an effort to pursue, the time of media presentation being when events are ready to announce. Who should coordinate, and why? > 6) RE-EMPLOYING PWP's as consultants .... and as policy-makers. Can you expand on the idea of consultant/policy-maker? How many PWPs can and want to do this? Consultants to whom and doing what? Based on what qualifications and credentials? There are lots of precedents and legal backing for employment of people with impairments. It sounds to me like a bootstrap effort, perhaps joint or cooperative, could be started by PWPs to research potential clients, determine what clients need, propose how to provide it, including analysis of cost/benefits. If such an effort were to materialize, what would be the time to present it to the media? > 7) PRESSURING the abysmally-flawed (American) N.I.H., which has failed to fund the $100,000,000.00 Udall Law (should Harold Varmus be pressured to RESIGN?) I see no public support for your characterizing the NIH that way or for entertaining your question re Dr. Varmus. I'm curious what the NIH Director's next report to Congress, which is supposed to cover Udall implementation, will contain. > 8) Planning public INFORMATION CAMPAIGNS, especially through TV and radio, about medical, surgical and other treatment options; There's a need for more awareness, especially among new PWP's, of existing information sources. Physicians need to be aware of patients' needs for information and to be able to indicate where info can be found. Also, there is a need for more local chapters of national organizations and/or greater outreach. For example, in my local phone book are listings for organizations for blindnesss, cancer, cerebral palsy, diabetes, heart disease, kidney disease, leukimia, lung disease, mental health, multiple sclerosis, muscular dystrophy -- but nothing for PD. > 10) Prioritizing MEDIA COVERAGE OF RESEARCH What's the issue about prioritizing? What does the general public need to know about research, and what to PWPs need to know? Right now there is no place where the "typical PWP" can find an overview of the current state of PD research. Review articles in professional journals are available to those with library access who can understand the technical stuff. Who should supply research overview information accessible to lay readers? Regarding Udall (item 7) and research: What promising research proposals are not funded? > I can envision that a panel discussion would be an excellent > format for a TV broadcast SERIES on "Issues in Conquering PD" . > It might include a roundtable of leading PWP's and CG's on the > above, and other issues. Each programme might add specially > invited guests. What audience do you envision for this other than PWPs and their relatives? What would attract the others? Phil Tompkins Hoboken NJ age 61/dx 1990