Hi MupstateNY! Thanks for getting back to me. I hope you get this message. The ALS Clinic at Columbia Med NYC has gotten back to us. Appointment 2/13. This is 2 hours from us, but they seem the best group to work with. There is a lack of ALS info in my area: neurologists or primary docs. Best of luck to you with Synapticure, they look like an awesome program, but they don't take her insurance. 