I have been silent about Ivan's issue for several weeks half hoping it
would go away but at the same time talking to several people from NPF
and e-mailing back and forth to Ivan.  I would like to present the
issues as I have distilled them.

Ivan set up the appointment with Dr. Sanchez-Ramos through NPF because
of hits impressive literature and Dr S-R's interest in Ivan's paper
published in the Mass. Young onset newsletter.   While as good or better
expertise exists much closer to Ivan he had confidence in Dr. S-R and
some rationale for choosing to see him.

Ivan also chose Miami for a rest and to see his ailing father and to
consider places he might move to in Florida.  He arrived in Florida May
5 and returned May 18- having the Doctor no show for an appointment on
May 17.

The appointment was scheduled by an employee of NPF even though Dr. S-R
is apparently employed by the U. of Miami.  That was a set-up for
misunderstanding and it is my understanding that NPF no longer will make
appointments for individuals but instead will refer patients to the
Doctors appointment Secretary.  Ivan made a strong effort to confirm the
appointment and the Doctor did not show for the 2PM apt until (according
to NPF) 4:30 PM 30 to 45 min after Ivan left.  Ivan certainly waited a
more than reasonable length of time and has reason to be angry.

In fact he might even have a case for small claims court-  but for no
where near what he claims. He could have flown back and forth to Miami
with his aide assuming no vacation and stayed over 1 night for much
less. When you factor in 10+ days there without medical appointments the
part of the air fare and expenses that were the "responsibility" of Dr.
Sanchez-Ramos, the U. of Miami and NPF are rather small.

Ivan-  you were wronged and are owed an apology- but I think the size
of your demand and the way you have presented the issue to the LIST has
turned a lot of people off.  While I would hope that NPF and Dr. S-R
might choose to  apologize to you and give to you a small amount of
money as reimbursement for the portion of your flight (and your
companion) that was devoted to the appointment.

 I have to say that in my opinion,  your reaction and your plea to us on
the list to react almost as if genocide were being committed is far out
of proportion to the wrong that has clearly been done to you.  I note
that the initial  reaction from the list had been supportive while as
time has gone on and your language has become more strident- inferring
plots against you- your support has dwindled.  It is my guess that as
contacts between you and NPF became more heated and your demands
appeared to them to be so out of line they chose to write them off
rather than compromise.

Make no mistake about the fact that I do think that a wrong was done to
you.  But the intensity of your reaction appears to be far out of
proportion to harm done to you.

I hope you can let go of this and get on with your life and resume the
productive input that you have provided to the list.

Best of luck


Charlie


--

CHARLES T. MEYER, M.D.
Middleton, WI
[log in to unmask]