By Amy Dockser Marcus
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.

The medical world has come a long way in the past century, thanks to the diligent work of researchers and scientists who strive to unlock the secrets of the human body and develop life-saving treatments. However, for many patients and their families, the pace of medical research can feel frustratingly slow, leaving them with little hope for a cure or effective treatment. In “The Power of Community: How Patient Advocates Are Transforming Medical Research,” award-winning journalist Amy Dockser Marcus sheds light on a group of individuals who took matters into their own hands, challenging traditional scientific practices and sparking a revolution in the field of medical research.

The book centers around a group of parents whose children have been diagnosed with a rare and fatal genetic condition called Niemann-Pick disease type C. This devastating disease hinders the body’s ability to process cholesterol, leading to a progressive loss of brain and bodily functions. Faced with a bleak prognosis for their children, these parents refuse to accept the status quo and instead set out on a mission to find a cure.

What sets these parents apart is their unwavering determination to break down the barriers that often hinder medical research. They form a collaboration with researchers and doctors, defying the traditional hierarchies and silos of the scientific world. Together, they become citizen scientists, contributing their own insights and expertise to the search for a cure. They engage directly with the FDA, ensuring that their voices are heard in the drug approval process. They even co-author scientific papers, sharing their findings with the wider medical community.

Amy Dockser Marcus skillfully tells the story of this remarkable community and their efforts to transform medical research. Through her powerful narrative, she explores the complexities and challenges that arise when different perspectives clash. The parents, doctors, and researchers don’t always see eye to eye, and the road to progress is often paved with disagreements and compromises. Yet, despite these obstacles, they find common ground in their shared goal of saving lives.

One of the most compelling aspects of “The Power of Community” is the way it showcases the potential of citizen-driven research. By actively involving patients and their families in the scientific process, the book demonstrates how diverse perspectives and lived experiences can lead to groundbreaking discoveries. It challenges the traditional notion that scientific research should be conducted solely within the confines of a lab, highlighting the value of community engagement and collaboration.

Reading “The Power of Community” is an emotionally impactful experience. The author’s vivid storytelling brings to life the struggles and triumphs of these families, painting a vivid picture of their daily battles against a relentless disease. The reader becomes deeply invested in their journey, rooting for them every step of the way. Through Marcus’s eloquent prose, we are reminded of the power of human resilience, the strength of community, and the potential for change.

Ordering “The Power of Community: How Patient Advocates Are Transforming Medical Research” is a compelling call to action. It offers readers a unique perspective on the world of medical research and encourages them to question the status quo. It challenges us to consider how we can be active participants in our own healthcare journeys and advocate for change. By supporting this book, readers not only gain a thought-provoking read but also contribute to the broader conversation about the future of medical research.

With its captivating storytelling and thought-provoking insights, “The Power of Community” is a must-read for anyone interested in healthcare, medical research, and the potential for patient-driven innovation. Amy Dockser Marcus has provided a compelling narrative that sheds light on the possibilities that arise when patients and their families become equal partners in the scientific process. It is a testament to the power of community and a hopeful glimpse into a future where medical research truly belongs to us all.

Product Details

• Publisher: Riverhead Books (February 14, 2023)
• Language: English
• Format: eBook digital
• Pages: 256
• ISBN-10: 0399576134
• ISBN-13: 978-0399576133