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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