I have a friend with some sort of offshoot it seems as well. I can't recall the name of the type that he has, but he lives a very difficult life in an assisted living facility. I really don't know what to do to help him as the doctors are essentially performing euthanasia by giving him high doses of lithium for his mental issues that are being caused by this disease and his difficult life. I really want to help him and I'm trying help get a site started that is pro alternate solutions/treatments for muscular dystrophy. Let me know if you'd like to help out at all by replying and I'll see what we can do to get things shifted into a higher gear.