A Virtual Conversation with Amy Dockser Marcus, Author of
We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine
Wednesday, February 8, at 7 PM EST on Zoom
On February 8, SWINY co-chair David Levine (@dlloydlevine) will talk with Wall Street Journal reporter and Pulitzer Prize-winning journalist Amy Dockser Marcus (@AmyDMarcus) on her new book, We The Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine, which will be published by Riverhead Books on February 14. Her book is a 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 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.
About Amy Dockser Marcus
Amy Dockser Marcus writes frequently about gene therapies and gene editing, citizen science, rare diseases, and other topics. Amy began her journalism career as a reporter for the American Lawyer in New York. She joined the Wall Street Journal as a news assistant in the New York bureau and became a reporter covering law.
Before joining the health and science team, she also spent seven years in the Journal’s Tel Aviv bureau covering Israel and the Middle East.
In 2005, Amy won a Pulitzer Prize in the Beat Reporting category for a series of stories about cancer survivors and the social, economic, and health challenges they faced living with the disease. Her ten-part series about an innovative collaboration between parents of children with a rare genetic disease and scientists, called “Trials: A Desperate Fight to Save Kids & Change Science,” won the American Association for the Advancement of Science’s Kavli Science Journalism Award for excellence in online reporting. Amy is the author of two books that grew out of her reporting for the Journal in the Middle East, The View from Nebo: How Archaeology is Rewriting the Bible and Reshaping the Middle East and Jerusalem 1913: The Origins of the Arab-Israeli Conflict.
Have a question for Amy Dockser Marcus you would like answered? Submit it here.
Wednesday, February 8, 7 to 8 pm EST