We the Scientists

How a Daring Team of Parents and Doctors Forged a New Path for Medicine

By: Amy Dockser Marcus

Narrated by: Kristen DiMercurio

Length: 4 hrs and 49 mins

Publisher's summary

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. The disease prevents cells from processing cholesterol, which leads to the progressive loss of the brain’s and the body’s ability to function. 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, 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 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.

©2023 Amy Dockser Marcus (P)2023 Penguin Audio

Critic reviews

“An absorbing narrative…Through details of perseverance, courage, and grace, frustration is ultimately eclipsed in We the Scientists by another theme. It is the name for the NIH drug discovery robots proposed by one of the parents: Hope.” —Science

“This book illuminates the painful tension between the extended time frames of medical research and the life spans of those hoping for a cure. . . . Marcus shows how parents, by imparting a sense of urgency to the search for a cure, have helped future generations of children even as they could not save their own.” —The New Yorker

“The story of a painful but inspiring search for a cure for a fatal disease.…A moving argument for a more focused, humane, and efficient system for conducting medical research.” —Kirkus (STARRED REVIEW)

Changes to The Status Quo

I like nearly anything to do with medicine, that’s the industry I work in. So there’s my bias. Now, this book is really about David & Goliath, metaphorically. It’s about what parents will do for their children and then how that live spreads to helping others. Good, healthy, fun read

A scientist reviewer

Superbly done with a vision we need. Marcus gives the human perspective on the most human of endeavors: helping one another. Her science is spot on, her compassion is the driving force. Read it.