During a period in which science is under assault by social media and politicians, this is a welcome story of collaboration among doctors, drug researchers, and the families of children with a rare genetic disorder. Kristen DiMercurio lets the clarity of the author's prose carry the weight with her straightforward narration, but her voice warms up in all the right places, including the many heartbreaking passages chronicling the short lives of these children. Amy Dockser Marcus knits together an argument for citizen science, in which traditional tools such as clinical trials can be supplemented with data and observations from families living with rare diseases that get little attention from pharmaceutical companies. D.B. © AudioFile 2023, Portland, Maine
We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine
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.
1141740147
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.
We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine
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.
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.
15.0
In Stock
5
1
![We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine](http://img.images-bn.com/static/redesign/srcs/images/grey-box.png?v11.11.4)
We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine
![We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine](http://img.images-bn.com/static/redesign/srcs/images/grey-box.png?v11.11.4)
We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine
FREE
with a B&N Audiobooks Subscription
Or Pay
$15.00
15.0
In Stock
Editorial Reviews
Product Details
BN ID: | 2940174885608 |
---|---|
Publisher: | Penguin Random House |
Publication date: | 02/14/2023 |
Edition description: | Unabridged |
Videos
![](/static/img/products/pdp/default_vid_image.gif)
From the B&N Reads Blog