Consider a disease with a history of disappointing clinical trials... trial after trial after trial... until this summer when one product (Neuraltus NP-001) seemed to have some positive effects on some individuals. It wasn't a miracle of biblical proportions, but it was like a parting of the Red Sea by ALS standards.
Consider a disease whose clinical trials involve a placebo group and have a timeline that is longer than the life expectancy of many patients. Consider a disease that leaves thousands of patients on the bench because they have had the condition too long to qualify for a clinical trial.
Should it surprise anyone that the same smart people whose lives are at stake have turned out to be a pretty impressive online band of reverse engineers? Give them a slight glimmer of hope and they don't sing and dance. They put their minds to work figuring it out. Smart people from every walk of life get ALS, and it has been pretty impressive how they found each other and decided not to be spectators in a life that dealt them a really bad hand.
Take a look --
http://www.als.net/forum/Default.aspx (Oral Sodium Chlorite thread)
Certainly it's risky. There is no doubt that these are courageous people who are cornered by a relentless disease and a drug development system that has failed them in the past. They're not going without a really good fight and an attitude to do something so that the next person will have a fairer fight.
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