Coalitions of patient advocates now help steer research funding toward particular projects. Lilli Carré for NPR hide caption

itoggle caption Lilli Carré for NPR

Victoria Ruiz (left), a postdoctoral fellow in immunology, works with Brianna Delgado, a high school student that she mentors, at the Blaser Lab, inside NYU's Langone Medical Center in New York, NY. Ramsay de Give for NPR hide caption

itoggle caption Ramsay de Give for NPR

Tom Murphy, 56, in his home in Gainesville, Va., was diagnosed with ALS four years ago. An experimental drug seems to have slowed the progression of his disease, he says, though most ALS patients aren't as lucky. T.J. Kirkpatrick for NPR hide caption

itoggle caption T.J. Kirkpatrick for NPR

Workers at the National Geographic Museum in Washington grind the rough edges off a life-size replica of a spinosaurus skeleton. Mike Hettwer/National Geographic hide caption

itoggle caption Mike Hettwer/National Geographic

Randen Patterson left a research career in physiology at U.C. Davis when funding got too tight. He now owns a grocery store in Guinda, Calif. Max Whittaker/Prime for NPR hide caption

itoggle caption Max Whittaker/Prime for NPR