So Much So Fast(2006)

At 29, Stephen Heywood discovers he has the paralyzing neural disorder ALS, also known as Lou Gehrig's disease. Filmed over 5 years, the documentary chronicles one family's ferocious response to an orphan disease: the kind of disease drug companies ignore because there's not enough profit in curing it. In reaction, and with no medical background, Stephen's brother Jamie creates a guerilla-science research group and in two years builds it from three people in a basement to a multi-million dollar ALS mouse facility, the largest anywhere. Finding a drug in time becomes Jamie's all-consuming obsession.