After Sam’s diagnosis, Gordon withdrew from her residency and began to study progeria full time. She and Berns started a nonprofit, the Progeria Research Foundation, and recruited her sister, Audrey, to serve as its executive director. Gordon organized a meeting of several dozen scientists from various fields: genetics, orthopedics, immunology. “I scoured the earth for anyone who knew anything that might theoretically be useful for progeria,” she said. She also assembled an international registry of dozens of progeria patients; Sam became friends with many of them. Berns, for his part, spent a year in the federal government, working as a senior adviser to the Secretary of Transportation as part of a White House Fellowship. At a work event one evening, he met Francis Collins, then the director of the National Human Genome Research Institute, which was sequencing a complete human genome for the first time. Berns told Collins about the diagnosis, not knowing whether he would recognize the condition. In fact, Collins had once cared for a patient diagnosed as having progeria.journey-inline-newsletterinline-newsletter