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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]