Mr. Larry Hoffheimer
NPF Washington Counsel
Washington, DC
January 11, 2000
Dear Mr. Hoffheimer,
Having never had any response from NPF President, Nathan Slewett, I am
writing
as a PWP , and as a dedicated, visible longtime patient-advocate, and
legislative
liaison, to ask you to resolve immediately a six-year long grievance
that I continue
to have with the NPF, and with you specifically.
My grievance can be summarized as follows:
Nearly six years ago, in May, 1994, I travelled by air with a
Maine C.N.A., Arthur Lemieux, from Maine to Florida, to be
evaluated for potential brain surgery at the NPF clinic, by Dr.
Sanchez-Ramos,
Editor of the NPF's esteemed Parkinson's Report magazine. My appointment
was scheduled by the NPF for me, at 2:00 PM on May 17. 1994,
at the NPF neurology clinic , at the NPF building in Miami.
I invested $2200.00 in the strictly medical part of my trip,
fully trusting that the NPF would give me the best possible help.
I still have the original receipts.
My dream of getting medical help from the NPFwas shattered,
when your NPF Report Editor , Dr. Sanchez - Ramos, was nowhere to be
found.
He was not present for my appointment with him. NPF also provided no
other
doctor to evaluate me. The NPF medical secretaries showed us the
appointment,
listed on that afternoon's printed NPF clinic schedule, when Mr.
Lemieux,
Mr. Pearson, and I arrived on time, at 2:00 PM, at the 2nd-floor clinic
, to be seen.
Mr. Lemieux and I returned, he to his job, me to my home, very early
the next
morning, on non-refundable airline tickets. My medical and
surgical questions were never asked, nor answered, despite four
months of work to prepare for the NPF appointment.
Arthur Lemieux came to visit me just about a month ago, and took me
out to lunch. His 4-year old daughter , Kaitlin, is now in a nearby
daycare
center here in Portland. He told me that he is as disillusioned as ever
about the NPF.
He now lives in nearby New Hampshire, but visits me when he can.
Kaitlin's mom, Carey, works very near to me, at the US Postal Service.
Once your staff (Julius Pearson) arranged the appointment for me,
in Miami at your Foundation building, with Dr. Sanchez - Ramos, I only
then added onto the same trip , a very, very rare visit to see my father
and step-mother,
and a week's rest in the Florida keys, following a long Maine winter.
Both of these accessory parts of the three-part trip were scheduled
so that they
immediately preceded the trip's primary purpose, the neurosurgical
evaluation
by your Report editor, Dr. Sanchez-Ramos, at the NPF clinic in Miami.
Six years have pased. I am too sick from PD to repeat a trip like that
now.
I need you to please understand, Mr. Hoffheimer, despite your previous
expressed
doubts, which I hope you will now drop, that I would never have gone to
Florida
at all, if the NPF had not graciously set up the surgical appointment for
me.
I am asking you, and the NPF, once again, Mr.Hoffheimer, to
RESPOND,
to reimburse me for ONLY the strictly medical part of the 1994 trip
($2200.00).
I have also had considerable directly-related expenses trying
long-distance to resolve this loss, especially about $800.00 in telephone
calls, photocopying and postage.
Unfortunately PD has taken its toll, and I am now very unsure about
the future. It. is a monumental task for a PWP like me to function in
a somewhat "normal" way. Unfortunately, there is no denying that
I am much closer to brain surgery, unless there is a medical cure almost
immediately. I am now in at least my 13th or 14th year of the battle
against PD.
PLEASE come forth, Mr. Hoffheimer. Heal this wound, and help
this ailing PWP. I believe that you have the power to end this painful
conflict.
I do not.
Let me add that I know you are committed to curing PD.I am
following
the reports from Washington about the current discussions at the NIH
with great
interest, as well as recent commentary by Dr. Perry Cohen and others.
Sincerely yours,
Ivan M. Suzman
50/39/36
Portland, Maine
PWP patient-advocate
