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Unless you're a millionaire ready to sponsor big multiple labs, you are really out of luck. That is the hard truth. Unless you're lucky and someone happens to figure out and fund it.

Using most of the personal energy and time might not really be advisable.

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This about sums up my situation. I saw one of the top neuro muscular specialists in the world and she flat out said to me, "Nobody wants to hear this, but I have to be honest with you. There is no cure and there isn't much hope for one. Since this is such a rare condition there is no money in trying to find a cure. All we can do is treat your symptoms and try to help with pain management. Beyond that just hope it progresses slowly."

And to make it even more difficult - there's stuff out there that could save you but isn't approved so you can't even make a calculated risk when you have little or no options.

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