We the Scientists

Praise for We the Scientists:

“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

“[A] gripping and deeply humane tale.” —People Magazine

“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)

“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

“an inspiring reminder that rare diseases aren’t the only branch of medicine that can benefit from an active and engaged public…Any of us, faced with challenging medical conditions for us or those we love, can be scientists.” —proto.life

“A deeply compassionate work of masterly reporting and storytelling, We the Scientists illuminates how science moves forward—and how much a dedicated group of advocates can accomplish. This is an important book that draws on both the heart and mind. It is the story of how discovery happens.” —Charles Duhigg, bestselling author of The Power of Habit and Smarter Faster Better

“We The Scientists offers an urgent, harrowing, and inspiring look at the beginning of a patient-led research movement in medicine. Amy Dockser Marcus has a sensitive, sophisticated eye for capturing not just the humanity of her subjects but also the ethical complexity of what they’re undertaking. The stakes could not be higher, making this account as vital as it is necessary.” —Robert Kolker, author of Hidden Valley Road

“As Amy Dockser Marcus shows in her lucid and riveting book, collaboration between researchers and the parents of children suffering from a rare and fatal genetic disease was the key to making strides towards a cure. In the looming age of Long COVID, when patient groups rather than researchers first noticed and recorded lingering symptoms, Marcus’s is a timely and important message.” —Laura J. Snyder, author of The Philosophical Breakfast Club

“Amy Dockser Marcus asks the big questions—how knowledge accumulates, whose life is worth living, the meaning of compassion—with a laser-like focus on one rare genetic disease. Heroes abound in this beautifully-written book in which scientists, professional and lay, work together to vanquish NPC.” —Robin Marantz Henig, author of The Monk in the Garden and Pandora’s Baby

Amy Dockser Marcus is a staff reporter for The Wall Street Journal. She won a Pulitzer Prize for Beat Reporting in 2005 for her series of stories about cancer survivors and the social, economic, and health challenges they faced living with the disease. Dockser Marcus is the author of The View from Nebo and Jerusalem 1913. She has a master of bioethics degree from Harvard Medical School and lives in Boston.

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