Crowdfunded Searches for Medical Miracles

As a medical student at Johns Hopkins University, Jimmy Lin worked on a case involving a 5-year-old whose development was suddenly stunted and who experienced unexplained and uncontrollable bouts of pain. His parents brought him to the best doctors at Harvard University, the Mayo Clinic, and other top medical centers. “It broke my heart seeing the parents’ faces drop when we told them it was most likely a rare genetic condition,” Lin says, sitting in a St. Louis coffee shop near the Washington University School of Medicine, where he now works as a genomics researcher. “I remember them walking down the hallway and wondering where they would go next.”

Mainstream medicine hasn’t focused its resources on the 7,000 rare diseases that have baffled doctors for decades and afflict a combined 350 million people worldwide. “There are millions of kids wandering from place to place that no one is really helping,” says Lin. He believes answers may lie in their genes. To find out, he and more than a dozen other young scientists and researchers created the Rare Genomics Institute, a nonprofit that leverages falling DNA sequencing costs and rising online giving to support medical research. On the institute’s website, children with mysterious illnesses can solicit the $7,500 needed to sequence their genes and their parents’ in search of new therapies.