We The Scientists

A Pulitzer Prize-winning reporter's moving narrative of a group of patient advocates who are revolutionizing the way medical research is conducted.

For more than half a century, medical advances have been driven by investigators launching experiments inside labs. Science is often conducted in isolation and geared toward the long view. This is the story of a group of people who tried to force the lab doors open: parents whose children had been diagnosed with a rare and fatal genetic condition known as Niemann-Pick disease type C. Recognizing that there would never be a treatment in time to save their children if things stayed the same, the parents set up a collaboration with researchers and doctors in search of a cure.

Reconciling different views of science took work. The parents, doctors, and researchers didn't always agree-among themselves or with each other. But together they endeavored to accelerate the development of new drugs. The parents became citizen scientists, helping to devise experiments and recording data about their children. Along the way, they advanced the radical idea that science must belong to us all.

Amy Dockser Marcus shows what happens when a community joins forces with doctors and researchers to try to save children's lives. Their extraordinary social experiment reveals new pathways for treating disease and conducting research. Science may be forever changed.