In 1992, the film Lorenzo’s Oil celebrated the true story of two parents who, despite their lack of scientific training, gathered the know-how and support they needed to develop a treatment for their son, who was suffering from adrenoleukodystrophy, a rare neurological disease.
Nearly 25 years later, Sonia Vallabh and her husband, Eric Minikel, quit their jobs — she as a lawyer, he as a programmer and analyst — and retrained as scientists to find cures for the genetic prion disease that killed Vallabh’s mother and that she herself is at high risk of developing. Soon after, she found herself serving as a patient representative in the White House Precision Medicine Initiative and leading a research initiative at the Broad Institute of MIT.
Today, the notion of the citizen scientist has moved beyond the realm of Hollywood and into the realm of possibility.
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