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Hi Lee SPSP is an agency dedicated to the fight against PSP in the U.S.. I'm "a little off" right now so my hands aren't cooperating to pull the info from my paper files right now. So although I can chicken-peck at the keyboard, I can't manipulate paper. I don't know what state y ou're in. But in Arizona, Daryl Bacon is an active advocate of family and friends of persons with PSP. A friend of his (also in my inaccessible garage files) has conducted a nationwide survey of persons affected by PSP for the symptoms, rate of progression, dosctors each gets care from, medicines taken, etc. Try Daryl (his wife had PSP). His phone is 602-944-3207. Maybe he can help you contacting the agency, and his friends quicker than I'm doing. I feel sure someone on the list will pop up with contact information for SPSP very soon . If not write back to me at [log in to unmask] and by then my meds will surely have kicked in and I'll have the file close-by. Best wishes for your mom. I'm sure you're a great comfort for her. Whether my kids are close or far, my kids (grown) are to me ! Maryhelen