Hello Dale and all,
I'm glad to be back online after a hard drive crash (AAAAARRRRRGGHH!!)
followed by problems with my ISP (see previous comment in parenthesis).
Dale Severance wrote:
> On November 9, 1996 I placed an idea on the listserv which is in
> abbreviated form here.
> About 2 months ago I started searching for a project to help the PD > community, to occupy my time and to maintain my optimistic outlook on > life.
> Working on the premises that there are 1,500,000 PWP in North America > and assuming we could collect $ 100 per person we could raise twice > the money proposed in the Udall Bill. Thus was born the idea of > starting with this group and branching out from here to try and > connect with as many PWP, their
> friends and their CG’s to begin a grass roots fund raising drive. I > also thought that a pledge of a monthly giving would generate greater
> participation with small monthly amounts adding up to a greater > donation than an annual one shot deal.
I agree with and support the concept. Seems to have a familiar ring to
it as a matter of fact. Regardless of that, your interest and initiative
to get the ball rolling is admirable.
> At this point I would like to state that I am working in an individual
> capacity without affiliation with an other person or organization.
This is where I would differ with your approach. You're asking for
problems, in my opinion. First, we don't know you from Adam. I would be
reluctant to write a check and send it to any individual and hope it
would go for the intended purpose under these circumstances. One of the
major PD organizations lost a substantial sum to a trusted person in the
organization, even with some safeguards, albeit inadequate, in place.
Dale, you're probably as honest as can be with motives purer than Ivory
Soap, but, we don't know you and this has the potential for disaster
written all over it.
Second, I think you're asking for trouble offering to handle funds for a
large group of people without a means of accountability in place. Let
there be any kind of "glitch" in the program, no matter how innocent,
and you risk being labeled a thief and liar by some, if not all of the
participants. I wouldn't think of doing something like this unless I
knew there was a watchdog in place for the group. The person handling
the funds should also be bonded for the protection of the donors.
> My firm in 1996 will match donations received up to $ 25.00 per > donation and for a gross total of $ 500.00 and will make another > matching offer for 1997.
This a a very generous offer and tends to show your intentions are good.
May I ask the name of the firm?
> 5. The PDF has offered to send an acknowledgment of any funds received > for a two month period to assist in establishing my credibility..
Would it make more sense, at the very least, to establish a trust
account with a major bank or S&L and require multiple signatures for the
withdrawal or expenditure of monies?
> I did not approach any other organizations with this request. Normally > the cost of acknowledging a small donation is too great an expense > for the large foundations.
Is it possible that we have an organization in place that could help
establish a "PD Research Trust"? I don't know what the structure of PAN
allows them to do. Are they a political action/lobby organization only?
I don't know the people involved, how they got started or what their
mission statement says. Maybe we could get some feedback on this.
If not PAN, or some other existing organization, could we establish a
"PD (Neurological) Research Trust" to be overseen by unpaid volunteers
with no marble shrine to their importance for offices. It would simply
collect and dispurse funds to the most worthy, approved organizations or
individuals doing research. It seems to me this could be done with
minimal overhead so that nearly all money would go for research. The
interest and committment I've seen from members of this list convinces
me this would be possible.
> I’m convinced we need to help ourselves in case Big Brother lets us > down again.
I absolutely agree! Too many of us are too dependent on our governments
for too much already. If half the energy, and all the money, that was
put into the Udall Bill was invested in our own grass roots effort,
think how far along we might be at this point. Remember the frustration
of begging Congress to spend some of OUR money the way WE wanted it
spent. Never mind all of the strings attached IF we do get it!
Think how satisfying it would be to help find the cure ourselves,
without the help, advice or permission of any government bureaucrats.
> Please consider making a contribution if only $1.00 a month. This list > is projected to grow to 8,000 members within three years which could > project to $ 8000 per month at the minimal amount of giving.
And if we all solicited contributions like we asked for support of Udall
we multiply our efforts many times over.
> Lets get started now.
> help me get this started because I have a lot more ideas to implement > as soon as this gets off the ground.
The sooner we start the sooner the cure is found. But, let's do it
properly. We can't afford mistakes.
> I plan to solicit a summary from each institution explaining their > operations, fundraising efforts and the method of distributing funds > for research and what areas are they especially researching . As > information is received I will highlight one institution each month.
An important part of the plan, in my opinion. We would more likely get
their attention and a response if we were an organized, credible group
that was a potential donor.
> My original goal was to raise funds strictly for research with no cost > to our group for the fund raising.
I believe this should be one of our main objectives. Overhead and
administrative costs should also be one of the criteria in selecting
recipients of any money from the Trust, as well as having the money go
directly for research.
> Not withstanding that goal I have placed The Parkinson’s Action
> Network as the first organization on the list even though
> the focus of their drive is not research orientated.
> Their commitment is to politically motivate Congress to increase
> funding for Parkinson’s research and if successful will channel more
> funds to PD research than any other single project.
Again, could their focus be broadened for the purpose we are discussing?
Comments from PAN will help.
> 1. Parkinson’s Action Network
> 2. Parkinson’s Disease Foundation
> 3. Emory University Medical School
> 4. National Parkinson Foundation
> 5. Brown University Movement Disorder Clinic
> 6. American Parkinson’s Disease Association
> 7. Loma Linda University
> 8. John Hopkins Univ. Now called Univ. of Medicine and Dentistry of
> New Jersey
> 9.Univ. of California in San Francisco Institute of Brain Research
> 10. United Parkinson’s Foundation St. Luke’s Medical Center in
> Chicago
> 11. Robert Wood Johnson University Hospital
> This list represents a summary of institutions recommended by the
> listserv commentators and there order of listing has no signifance
> with exception of PAN’s listing
Logically, it seems to me, we should direct support where it is most
likely to produce results, not pay for administration.
Let's throw some ideas in the pot, stir it around and see what we get.
Hopefully,
Gaylon
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