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Andrew and fellow advocates, Your message regarding the NAMI kit points out two very important and as yet unaddressed issues in our Udall grassroot activities: 1/ there is no national organized public relations effort to reach out to the media and business leaders in promoting the Udall bill, and 2/ I am unaware of previous efforts (if any) of coordinating grassroot advocacy among the "brain" diseases. Can you just imagine NIH/NINDS' reaction to a committee of representatives from all the orgs requesting parity of funding-- ofcourse PD levels would have to be brought into line first! Would their war-cry by: "NO EARMARKING"?? To all who have experience in public relations and/or have time and energy to contact organizations, please step forward and identify yourselves! I know there is a lot of talent "out there". Letter writing is certainly one of our fortes. After all, that is what we do on this list. Anyone interested? Regards, Margaret At 11:52 PM 5/27/97 -0400, Andrew John Conovaloff <[log in to unmask]> wrote: >The following is summarized from the NAMI ADVOCATE (March/April 1997) >-- NAMI = National Association for Mentally Ill, > a grassroots/family organization focusing on schizophrenia, > schizophrenia-affect, bi-polar, depression, obsessive-compulsive, etc. > >Title: Update: Campaign to End Discrimination >Subtitle: Reach out to legislators, business leaders, and the media in 1997 > Science and Treatment Kit will show you how >By: Ann MacDonald, Campaign Regional Director, East >-------------- >Photo of kit caption: This Science and Treatment Kit is the latest resource >provided to the grassroots by the Campaign to End Discrimination. >The kit will be on loan to anyone from state offices in late March. >They are limited and sent only to each state AMI office, so you will >have to share within your state. Please note that these kits are not >available from the NAMI (National AMI) office. >-------------- >Text: Do you want to increase media coverage of the science and treatment >of brain disorders? Educate legislators by showing them that brain >disorders are like other physical illnesses? Reach civic groups and >business leaders who may be willing to support your work. > >Worthy goals, all of them. But how do you do it? Especially if you, >like most affiliate and state leaders, are overwhelmed with too much >to do and too little time to do it. > >Take heart. The Campaign's Science and Treatment Kit will provide you >with the presentation materials to do such outreach and a step-by-step >guide to how to use it to your advocacy advantage. The kit is a perfect >example of the kinds of products the campaign will be offering you on >a regular basis in the next year -- tools that will advance your own >state's or affiliate's objectives while communicating the campaign's >message points: Mental illnesses are brain disorders; treatment works; >discrimination must end. > >Unveiled at NAMI's February legislative conference in Arlington, the >kits will be distributed to representatives of all 50 states affiliates >at the St. Louis state coordinators' training in late March. They >contain a brain model and pictures showing the physical differences >in brains that are affected by brain disorders. They also contain >a video featuring researchers from the National Institute of Mental >Health -- including its director, Steven Hyman, M.D. -- who discuss >the physical origins of brain disorders and new advances in treatment. > >One of our strongest weapons against discrimination is science. >In the last few years, the overwhelming weight of medical research has >demonstrated that mental illnesses are biologically based and that >effective treatment works. The kit will give you the tools to >communicate the latest scientific information about brain disorders >to three key audiences: business leaders, legislators, and reporters. >These people, who are the "influentials" and "multipliers" at the top >of the Campaign pyramid, have the power to act on this information >and put an end to discrimination. > >At the same time, you may want to reach these key audiences to advance >your own state's particular goals. Few affiliates, for instance, are >completely satisfied with their current fund-raising efforts. Many >have intended to do greater outreach to business and civic groups in >the hope of broadening their base of financial support. The Science >and Treatment Kit gives you the tools to do so. > >And for those who already feel overworked and overwhelmed, rest assured >that the kit is user-friendly. It includes separate sections for >explaining how to use its materials when making presentations to the >media, business leaders, or legislators. It also has step-by-step >guides to how to make a presentation, handle questions, provide >recognition and thanks to the person who invited you to talk, and >enlist new members for your affiliate and NAMI. > >We think you will enjoy using the Science and Treatment Kit. And >we hope it will help your state or local affiliate achieve its >own goals -- whether those goals are persuading a legislator to >vote for parity, finding a reporter willing to do a feature about >brain disorders and their treatment, or convincing a business to >provide financial support for the work you are doing. >-------------- >Dotted Sidebar: Clip and Duplicate >Title: How businesses can help end discrimination against people > with brain disorders. > >1. Understand that one in five American families -- and therefore >one in five employees in a company -- has a loved one with a serious >brain disorder such as depression, manic depression, schizophrenia, >panic disorder, and obsessive-compulsive disorder. > >2. Recognize that brain disorders are biologically based illnesses, >just like diabetes, cancer, and heart disease. To treat brain disorders >differently from other illnesses is discriminatory. Yet nine out of >ten health insurance policies do just that. > >3. Acknowledge that treatment works. Currently 60 percent of people >with schizophrenia respond to treatment, as do 65 percent of people >with manic depression, and 80 percent of people with depression. Those >success rates are equal to, and in some cases greater than, the success >rates for treatment of other diseases. Only about 50 percent of >people with heart disease respond to treatment, for instance. > >4. Realize that the cost of treating severe mental illness is comparable >of less than the costs to treat other serious illnesses. It costs >the same amounts per year to treat someone with schizophrenia, for >instance, as it does to treat someone with severe diabetes. > >5. Learn how affordable providing equitable health insurance can be. >Study after study, and the experience of other businesses, has shown that >equitable health insurance coverage adds less than one percent to >premium costs per year. These costs are more than offset by reduced >absenteeism due to illness and increased productivity as a result of >treatment. > >6. Consider providing equitable health insurance for your employees. >NAMI will be glad to show you how. >--------------End dotted sidebar------------ >End article--------------------------------- > >My message: >----------- >I hope this will help PAN and the Udall Bill workers on this list. >I feel that we have been somewhat self-centered and myoptic. >When I attended the PAN '95 Forum, I bought a copy of the >Alzhiemers Public Policy Forum notes held in Washington a month earlier. >I envied the Alzhiemers effort because it was more complete and >suggested that we join together into an alliance with other brain >disorders to lobby congress and the media. No one seemed interested then. >Strategically, I think, we'd be much more persuasive as "all brain >diseases/disorders in unison". We need to balance the inequity in per >capita, or per death, funding. Idealy for the nation, NIH funding should >substantially grow and all diseases should get a fair share of attention. > >In this is the win-win optimal we should seek, I think. > > > > > 0===================================================================0 > | @..@ A.J. CONOVALOFF | > | (----) "The Molokan Cyber-Cowboy" __o | > | ( >__< ) PSP Support Groups of Arizona `\<, | > | ^^ ~~ ^^ [log in to unmask] . . ..(*)/`(*) | > 0===================================================================0 > > Margaret Tuchman (55yrs, Dx 1980)- NJ-08540 [log in to unmask]