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WE THE SCIENTISTS

HOW A DARING TEAM OF PARENTS AND DOCTORS FORGED A NEW PATH FOR MEDICINE

A moving argument for a more focused, humane, and efficient system for conducting medical research.

The story of a painful but inspiring search for a cure for a fatal disease.

Dockser Marcus, a Pulitzer Prize–winning Wall Street Journal reporter, had finished a series on advances in cancer therapy when she endured the death of her mother to a rare cancer for which no treatment existed. The author’s research revealed that activists had often pressured the Food and Drug Administration to pay attention to diseases such as AIDS and allow community participants on hospital and government advisory committees. It was an effective approach, but the author found that the scientists called the shots. They were the experts who would design experiments and work at their own, careful pace. This lugubrious system has worked miracles, but it’s too slow if a loved one is sick. Dockser Marcus discovered others with the same experience who had organized to work with and even guide researchers. They called themselves “citizen scientists.” The author concentrates on the fight against the rare genetic defect Niemann-Pick disease type C, which affects only about 200 individuals in the U.S. and 500 globally. Often healthy at birth, affected children “progressively” lose the ability to walk, talk, and eat; most die by age 19. Dockser Marcus introduces us to the families, children, physicians, researchers, and FDA officials. Almost all are sympathetic. Rather than merely lobbying or raising money, parents have come together to search for treatments and suggest lines of research. Fiercely motivated, they have educated themselves, devouring medical journals so obsessively that some have written articles for these same journals. They have convinced researchers and government agencies to launch studies and then cooperated closely, not only volunteering their children, but also gathering far more data than the usual parent. The author ends her expert mixture of reportage and storytelling on a somewhat hopeful note. Promising treatments are in the pipeline, but there have been numerous bitter disappointments, and many affected children have suffered serious complications during trials.

A moving argument for a more focused, humane, and efficient system for conducting medical research.

Pub Date: Feb. 14, 2023

ISBN: 9780399576133

Page Count: 256

Publisher: Riverhead

Review Posted Online: Jan. 20, 2023

Kirkus Reviews Issue: Feb. 15, 2023

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WHAT THIS COMEDIAN SAID WILL SHOCK YOU

Maher calls out idiocy wherever he sees it, with a comedic delivery that veers between a stiletto and a sledgehammer.

The comedian argues that the arts of moderation and common sense must be reinvigorated.

Some people are born snarky, some become snarky, and some have snarkiness thrust upon them. Judging from this book, Maher—host of HBO’s Real Time program and author of The New New Rules and When You Ride Alone, You Ride With bin Laden—is all three. As a comedian, he has a great deal of leeway to make fun of people in politics, and he often delivers hilarious swipes with a deadpan face. The author describes himself as a traditional liberal, with a disdain for Republicans (especially the MAGA variety) and a belief in free speech and personal freedom. He claims that he has stayed much the same for more than 20 years, while the left, he argues, has marched toward intolerance. He sees an addiction to extremism on both sides of the aisle, which fosters the belief that anyone who disagrees with you must be an enemy to be destroyed. However, Maher has always displayed his own streaks of extremism, and his scorched-earth takedowns eventually become problematic. The author has something nasty to say about everyone, it seems, and the sarcastic tone starts after more than 300 pages. As has been the case throughout his career, Maher is best taken in small doses. The book is worth reading for the author’s often spot-on skewering of inept politicians and celebrities, but it might be advisable to occasionally dip into it rather than read the whole thing in one sitting. Some parts of the text are hilarious, but others are merely insulting. Maher is undeniably talented, but some restraint would have produced a better book.

Maher calls out idiocy wherever he sees it, with a comedic delivery that veers between a stiletto and a sledgehammer.

Pub Date: May 21, 2024

ISBN: 9781668051351

Page Count: 384

Publisher: Simon & Schuster

Review Posted Online: March 5, 2024

Kirkus Reviews Issue: April 1, 2024

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BEYOND THE GENDER BINARY

From the Pocket Change Collective series

A fierce, penetrating, and empowering call for change.

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Artist and activist Vaid-Menon demonstrates how the normativity of the gender binary represses creativity and inflicts physical and emotional violence.

The author, whose parents emigrated from India, writes about how enforcement of the gender binary begins before birth and affects people in all stages of life, with people of color being especially vulnerable due to Western conceptions of gender as binary. Gender assignments create a narrative for how a person should behave, what they are allowed to like or wear, and how they express themself. Punishment of nonconformity leads to an inseparable link between gender and shame. Vaid-Menon challenges familiar arguments against gender nonconformity, breaking them down into four categories—dismissal, inconvenience, biology, and the slippery slope (fear of the consequences of acceptance). Headers in bold font create an accessible navigation experience from one analysis to the next. The prose maintains a conversational tone that feels as intimate and vulnerable as talking with a best friend. At the same time, the author's turns of phrase in moments of deep insight ring with precision and poetry. In one reflection, they write, “the most lethal part of the human body is not the fist; it is the eye. What people see and how people see it has everything to do with power.” While this short essay speaks honestly of pain and injustice, it concludes with encouragement and an invitation into a future that celebrates transformation.

A fierce, penetrating, and empowering call for change. (writing prompt) (Nonfiction. 14-adult)

Pub Date: June 2, 2020

ISBN: 978-0-593-09465-5

Page Count: 64

Publisher: Penguin Workshop

Review Posted Online: March 14, 2020

Kirkus Reviews Issue: April 1, 2020

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