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
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