Ah Bobby, You knew you would rope me into this one,didn't you?. I have been granted Compassionate Use by the FDA and have taken PPX for over 14 months. Some of my parts are greatly improved, and some keep on slowly progressing. I was never asked to pay for my drugs but was informed of the financial situation. Also I should say here that I am from the generation before entitlements and find it reasonable to pay for what I need..For this partucular drug, I would have sold everything I own to participate in the study, and still would. This drug works. I hope everyone will make a sizeable donation to UVA for further research. In my opinion what good is money when I am dead. Since you only have one trip around, I am asking all of you to write a check to UVA. Your good friend, Susan