I just found out about this foundation so I don't know anything about it. So, I assume people go to it for help in staying alive through a case of Myasthenia Gravis. Once you get this autoimmune disease you are likely dealing with it the rest of your life sort of like Diabetes or something like that. However, many cases are manageable where people can resume their lives at some point. Often the worst symptoms are the first 2 or 3 years and then people find medicines and ways to cope better (if they haven't died by the first 2 or 3 years first that is).
When my son first met his neurologist he couldn't believe my son was still alive after what he had already been through. But since then he has saved my son's life many many times in various ways.
This disease is the body attacking the nerve sheaths of a person's neurons and muscles which is why muscles like swallowing and jaw muscles are often affected the first along with other things like the ability to breathe. So, you can still breathe manually if you are awake without Mestinon but without Mestinon every 4 hours or so if you go to sleep you will stop breathing and that's all she wrote. in other words you aren't around anymore.
However, each case is somewhat different so trying to survive the first 2 or 3 years might be impossible for some people without the right kind of help like Stanford university Hospital in California or OHSU in Portland, Oregon. Both are teaching colleges and so very experimental in what they are capable of. They are two of the most cutting edge hospitals in regard to treatments on the west coast of the U.S. Washington likely in Seattle likely has something like this too I'm thinking.
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