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Walter O. Huegel wrote:
>
> 1. Needed: More and better organized local support groups,
> incorporated as not for profit organizations with member constituents;
> Board of Directors; Advisory council. Tax deductable.
> 2. Avoid turning the group meetings into a series of classroom
> lectures, recognize each person's personal and social needs.
> 3. Challenge people into serious giving, use a lawyer, wills. Churches
> ask for tithes,  for serious money,  instead of being satisfied with
> walking around pocket change.  Approach the rich and poor, Leona
> Helmsley's husband a NYC real estate man, had Parkinson's, and major
> money.
> 4. The movie, The Edge, with Anthony Hopkins as the billionaire,
> reflects today's attitude that being a millionaire is no big deal,
> serious money men have billions.
> 5. How often have you heard the response, "I would give to the charity
> if I could be sure that it went directly into research funding?".  Why
> not ask, e.g., the PD Centers of Excellence, How can such giving be
> accomplished, especially without the brass placque on the wall, and
> the black bow tie soirees.
> 6. Do the major players, regional and national organizations go around
> organizing and nuturing support groups?  Unions organize local groups,
> or did so in the past.
> 6. Why isn't there more networking between regional and special
> interest groups? A Fall or Spring overenight retreat, lakeside, (Just
> remembered Jesus held those lake side meetings). This could bring
> together representativess, e.g., I have a list of 20 upstaatee NY
> contact people, groups.
> 7.How is it that a Neuro from a medical school has never heard of PAN?
> Why do we not hold doctors accountable for their compartmenalizing of
> knowledge, e.g., not informing their patients that there is a local
> support group. Why don't the national groups do volume buying ofitms
> such as the lucite holders needed to place  pamphlets in doctor's
> offices?
> 8.Why isn't there a catalogue put out by the natinal groups that would
> contain practical items for a local group.  I had to research for a
> cordless portable microphone system, and a SONY HI 8 video system to
> use at meetings and in-service presentations.  My daughter, an
> architect, made a banner, with a logo, for use at health fairs. Why
> not a catalog of such items?
> 9.Both audio-visuals were bought with $2,000 from a grant which we
> received from a local medical group. A visitor from another group
> wanted to know how we applied for the grant.  Why doesn't   the
> national groups hold seminars in grantmanship?
> 10. Shall I continue?  Don't let someone carry the piano while you
> carry the bench!  Start out by giving a $1,000 to your local support
> group. Surprise people by your unanticipated  generosity.It will make
> commitment to the cause palpable to yourself and visible to others, It
> will demonstrate  leadership, "putting your money where your mouth
> is."...Unlike someone in high office who does the talk, but not the
> walk." And remember the widow's mite, a small   coin, all she had.
> This  was cited as commendable giving. Some think, " you carry the
> piano and I'll carry the bench". Can you add your ideas to this list?

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Date: Mon, 20 Oct 1997 20:17:02 -0300
From: "Walter O. Huegel" <[log in to unmask]>
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Subject: Seminal ideas?
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1. Needed: More and better organized local support groups,
incorporated as not for profit organizations with member constituents;
Board of Directors; Advisory council. Tax deductable.
2. Avoid turning the group meetings into a series of classroom
lectures, recognize each person's personal and social needs.
3. Challenge people into serious giving, use a lawyer, wills. Churches
ask for tithes,  for serious money,  instead of being satisfied with
walking around pocket change.  Approach the rich and poor, Leona
Helmsley's husband a NYC real estate man, had Parkinson's, and major
money.
4. The movie, The Edge, with Anthony Hopkins as the billionaire,
reflects today's attitude that being a millionaire is no big deal,
serious money men have billions.
5. How often have you heard the response, "I would give to the charity
if I could be sure that it went directly into research funding?".  Why
not ask, e.g., the PD Centers of Excellence, How can such giving be
accomplished, especially without the brass placque on the wall, and
the black bow tie soirees.
6. Do the major players, regional and national organizations go around
organizing and nuturing support groups?  Unions organize local groups,
or did so in the past.
6. Why isn't there more networking between regional and special
interest groups? A Fall or Spring overenight retreat, lakeside, (Just
remembered Jesus held those lake side meetings). This could bring
together representativess, e.g., I have a list of 20 upstaatee NY
contact people, groups.
7.How is it that a Neuro from a medical school has never heard of PAN?
Why do we not hold doctors accountable for their compartmenalizing of
knowledge, e.g., not informing their patients that there is a local
support group. Why don't the national groups do volume buying ofitms
such as the lucite holders needed to place  pamphlets in doctor's
offices?
8.Why isn't there a catalogue put out by the natinal groups that would
contain practical items for a local group.  I had to research for a
cordless portable microphone system, and a SONY HI 8 video system to
use at meetings and in-service presentations.  My daughter, an
architect, made a banner, with a logo, for use at health fairs. Why
not a catalog of such items?
9.Both audio-visuals were bought with $2,000 from a grant which we
received from a local medical group. A visitor from another group
wanted to know how we applied for the grant.  Why doesn't   the
national groups hold seminars in grantmanship?
10. Shall I continue?  Don't let someone carry the piano while you
carry the bench!  Start out by giving a $1,000 to your local support
group. Surprise people by your unanticipated  generosity.It will make
commitment to the cause palpable to yourself and visible to others, It
will demonstrate  leadership, "putting your money where your mouth
is."...Unlike someone in high office who does the talk, but not the
walk." And remember the widow's mite, a small   coin, all she had.
This  was cited as commendable giving. Some think, " you carry the
piano and I'll carry the bench". Can you add your ideas to this list?


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