Dear Jim,
When you telephoned me several days ago and we agonized together over
the seeming disunity within POPC (as in popsical -- my acronym for
the
Professionally Organized Parkinson's Community!), you said you would
email me an advance copy of your response to the critics of your plan to
establish a coalition of PWP. Had you done so I would have advised you
to kill it.
Before reading it I was half a mind to go along with the notion that
the important thing was finding a PD cure and that it didn't much
matter who provided the facilties and/or money so long as it enabled me
and other ordinary Parkies with no affilation with any POPC member to
advance that cause. Generally speaking that is still my view, but your
new emailer makes it clear that it does matter in this instance.
Your letter is contradictory in this regard. You state without
reservation that you couldn't care less who came out on top in the
competition between PAN, APDA and NPF, yet at the same time you sing the
praises only of Messrs Hoffheimer and Turrene, remark that NPF is
uniquely capable of moving us toward a cure, admit that you serve on
NPF's Board, give as the address
of your new coalition that of NPF's headquarters and furnish
Hoffheimer and Turrene's email addresses for those interested in
your initiative to contact, and fail to distance yourself from the
admirer who emails us that he expects NPF to emerge the contested POPC
leader.
How in heaven's name would you expect Parkies who think kindly on APDA
and PAN -- let alone are members of those organizations -- to pitch in
wholeheartedly with you to create an agenda for the entire Parkinson's
community under those circumstances?
My concern, Jim, is that by this approach you accomplish two things:
you lose a good deal of valuable input; and you fracture POPC, thereby
destroying
the unity which -- no matter how tenuous -- helped to win the Udall
battle and
could help to speed the final victory if it can be maintained, as I'm
sure it can.
Toward that end I urge you even at this late date to put your plans on
hold
while you do two things: first, find yourself a neutral headquarters;
second, go after as broad a POPC base of support as you can get.
Obviously you should
have done this at the start rather than springing the exsistence of
your coalition as a surprise on everybody but NPF.
You know how much of a fan of yours I have been, if only from my
recent
letter of praise to you on this Internet service. I am also a fan of
NPF, Larry and
Bill, and especially of Robin Elliott. It was Larry who first sniffed
Udall victory at the endof October, Bill who cheerfully (on your
initiative, as I recall) reimbursed my $400 car-rental expense out of
NPF's coffersto attend the PAN forum in Washington last July (how's that
for unity and cooperation!), and
the delightful Robin who put his 200-plus pounds whipersonally into
the NewYork marathon, an event that benefitted all POPC members! My
fear is that your effort may flounder and wind up dead in the water,
meanwhile creating animosity and resentment and causing actual harm
toNPF as well as to you , Dale Severance, my mentor and First Parkie
Charlie Richards, and the other fine people you have enlisted to
back your otherwise sensible initiative.
If my assessment is even partially correct, the impairment to our common
goal of
licking PD could be substanial, which is why I am writing this letter.
Yours in humble
sincerity,
Elliott
