Print

Print


Folks:

I have been following along all these posts concerning finding the number of
PWP.  The reasons that seem to be given (please correct me if I'm wrong about
this) are that more accurate, bigger numbers can be used to influence more
research interest and promote more research money for that interest.

I couldn't help reflecting on how many special interest groups and causes get
exactly the research and money they want because they ignore their small (or
even strong numbers) and concentrate on the marketing of their cause.   Good
marketing techniques have been behind most Congressional funding and is
certainly behind most Foundation funding.  High numbers of those affected have
usually NOT been the reason for success of winning contributions from these
money sources.  And it is doubtful that most researchers turn their life work
toward a particular disease or medical need because of the number of people who
suffer from it -- rather it is usually because they were touched by it's effect
on the   individual that awakens their sense of human compassion and dedication.

Therefore, I have found that most professional dedication, research and
financial support has historically been generated by getting the attention of
the person or group desired and then:
alerting;
informing;
demonstrating;
involving:
and inviting
those who are needed to "join the parade" to fulfill the need -- and then
nurturing them along as they do so, continuing to always make them feel "a part"
of the group, it's problems, and the final solution.

Good marketing draws followers and supporters -- even to causes where only a few
are suffering and in need of support.  It seems to be that most of the US is
still very misinformed that PD is not just a "shaking" thing that "old" people
get and just "live with".   If we focus our time and energy on  achieving what
so many groups of much smaller numbers have achieved, we will have the successes
we desire without taking the time or resources to actually "count" our numbers.
We can do that later when people are more easily counted as they go through the
newfound treatment for cure!

And, good marketing of this great cause is something that every PWP can learn
and use daily to help us all achieve our goals.   Does PD have a
marketing/fundraising firm on board?   The numerous PD foundations certainly
have "pro's" who are trained to do this as effective lobbyists.   Could we as
PWPs and CGs work with any or all of them more closely to help bring us all
aboard this effort to make our Parade loud enough to get what we want  --
regardless of our numbers?

Just more thoughts,  glenna coplin (CG of Don Coplin 72/9/56)

Lorraine Jeffe wrote:

> Phil Tompkins reference to Dr. Lieberman's article was of interest. I share
> his desire to have more accurate data. My older brother, who died abour 6
> years ago, also had Parkinsons. He lived in North Dakota all his life, except
> for college and the service. I lived there until I went away to school when I
> was 17. At this point I have my own theory of what caused our Parkinsons. At
> this point, of course, there is no scientific backing .
> It's always difficult for me to know what to  ascertain is factual, as  it
> isn't often stated the margin of error, how many cases, etc.
> Hopefully, more accurate statistics will be available.Good luck in what you
> are trying to do.
>
> Lorraine Jeffe