Recommended article at CNN on parents who grew frustrated with a lack of resources and treatment options for their children and took action. You can view this as frustrating that the pharmaceutical companies are not doing enough research or you can look at this as a way parents are taking matters into their own hands and forcing the issue by bringing attention to the illnesses their children are suffering from and raising funds needed to push the issue even farther.
I think it's a combination of both but given there are limits to what research pharmaceutical companies can do with their bottom line being one that also includes marketability of a drug, what these parents are doing is admirable and very well could save the lives of not only their child but others...
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