No one wants to say it so I will. People are scared of being ripped off. It can and has happened in the past that people have been done in, in terms of recieving "treatment" at a high cost.

People with chronic diseases are desperate and will do and try anything to survive - it is our natural instinct. There are bad people in the world that will take advantage of a situation like this to make money make no mistake....

The other side is that some of these guys are doing research to help cure this disease and they are getting some results even if it isn't quite as quickly as everyone on here is hoping for.....

So you need to consider everything before committing to expensive research. I recommend going for it as long as you don't put your family in a difficult position the day you are not here anymore.

Apologies if I sound insensitive that is not my intention.