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, identifying promising new treatments and helping devise experiments. They recorded data about the children and co-authored scientific papers sharing findings. They engaged directly with the FDA at each step of the drug approval process. Along the way, they advanced the radical idea that science must belong to us all.
Amy 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.