In 2010, Sonia Vallabh watched her 52 year old mother die of a rapid, mysterious, undiagnosed neurodegenerative disease. One year later, Sonia learned that her mother’s disease had been genetic, and that she herself had inherited the causal mutation, making it very likely she would suffer the same fate in 20 years’ time. There was no prevention, treatment, or cure available. Despite having no prior training in biology, Sonia and her husband Eric Minikel set out to re-train themselves as scientists and devote their lives to searching for a treatment or cure for her disease. They quit their jobs in consulting, started a scientific blog, began taking night classes and attending conferences, found new jobs in research labs, and eventually enrolled as PhD students in biology at Harvard Medical School. They are now based at the Broad Institute of MIT and Harvard where they have launched a new therapeutic initiative to discover drugs for her disease.