We the Scientists

Praise for We the Scientists: 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 We The Scientists is a deeply moving and intimate account of families confronting a rare and tragic disease-and also a bold proposal for a remaking of the compact between medical research and patients. -Nicholas Lemann, author of Promised Land and Transaction Man