Sharon Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, and the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), which affects Terry’s two adult children. In Sharon’s 2016 TEDMED Talk she shares how her children’s diagnoses inspired her—a person with no medical background—to embrace citizen science as a means to transform biomedical research and healthcare.