At my annual appointment with Dr. Florian Eichler (Mass Gen/Harvard), we discussed the lack of AMN experts or neurologists with significant experience treating AMN patients in Texas (or in the South, for that matter). He suggested that a meet-up in Austin could help facilitate communication between AMN experts and those who suffer from it, as well as allow an opportunity for those diagnosed with AMN to compare notes. I volunteered to organize it and tentatively suggested sometime in October of this year.
I'm sending this message to gauge interest in attending such an event. If you are interested or know someone that may be, please respond to this message or to me personally by email, email@example.com. I have also posted this message in the inspire.com (ULF) discussion boards as well. Any assistance or recommendations on spreading the word would be greatly appreciated.