Hi Ken,
I don't mean to sound callous, but your plea, to me, is ==> almost <==
hilarious. It is one of these situations where you don't know whether to
laugh or cry.
There was a time, when a large group of refugees from *P* were looking for a
home on AOL, with the hopes of expanding the dissemination of Parkinson's
information and general communications services on Parkindon's Disease. This
group was given promises, and led to believe that everybody wanted the same
thing they were searching to obtain. The first of many fiascos was that it
took EIGHT WEEKS and many requests to get the AOL Starter Kits mailed out to
the - at one time - eager group. Five remained after 8 weeks. The result:
the person who was responsible was hailed as a good worker by his boss (who
is not an employee), even though she had to mail out the kits herself to get
them out. After many words and questions (some of which were not germaine
to what we were trying to accomplish), it became obvious that we did not have
a commitment from AOL. You asked me to prepare a plan of action, which I
did, and one of our group, recognizing a contractor whose agenda appeared to
be different than ours, wrote Mr. Case regarding AOL's willingness to
support a PD center of information. At that time you, Alan and our group
were supposedly involved. Mr. Case never answered the letter, Elin stopped
her communication (which only flowed one way as she never did answer my
questions), and nothing ever went forward from there. Now we are to plead -
some year later, after they ran off most of us that truly wanted to do
something big on AOL - for what couldn't get done with a ready-made force at
hand. We were then, in good faith, willing to go all out with just a little
bit of encouragement. We NEVER got even an indication of support from AOL
via their contractor, and when we sought AOL's interests directly, the
contractor was unhappy that we had tried to contact AOL directly.
Interesting!
As long as there are political self-agendas and economic goals so diverse, it
doesn't look possible for us that have PD ...down in the trenches.
I wish you luck, and hope that it happens, but I hope you don't mind if I
don't hold my breath. I sincerely hope that I am wrong. Hedge your bet. I
am all for greater dissemination of more and current information on PD and
"whats new". I do not feel, from the history of what I preceive as hidden
agendas and no AOL direct expression of support, that this effort has a ghost
of a chance.
VernD
PS: How is this for details, Simon? I agree, if you don't know what the plan
is, how can you write APDA in approval of it!?
cc: Dr. Paul Maestrone, APDA
Mr. Frank Williams, APDA
Mr. Julian Pearson, NPF
Ms Dinah Tottenham Orr, PDF
Ms Judy Rosner, UPF
AOL: Steve Case
Memonte
ESilveous
JFinch
JerryhG
BsrbYac
Bonander
AFL DonR
