All you say is so true, @anotherfinemass. The one frustrating thing for all of us with rare or orphan disorders is the lack of research. Drug companies are less likely to spend money developing treatments for rare disorders that affect only a small percentage of people, because it is not that profitable for them. The frustrations for these disorders are too long to describe. It seems you have a good handle on what you need to do and who you need to find. I certainly wish you well.

Will you be going to Mayo for a consult?