Hey, Check This Out!

PostedAugust 16, 2021 · 1 minute read

This week, genetic technologies, parenting and high-risk children.

By AllStripes

A person with headphones on peers into their phone, intrigued.

Hey, Check This Out! is a weekly list of content curated with the rare disease community in mind. Have a link to share? We’d love to see it. Contact us on Twitter, Instagram or Facebook and let us know what you’re reading, listening to and watching.

The Gene Machine

A thoughtful, thoroughly researched and reported book on how genetic technology is changing modern parenting. Bonnie Rochman writes with sensitivity and detail, tackling a number of complicated subjects. Pulitzer Prize–winning author Siddhartha Mukherjee called it “an exciting, informative and lucidly written book about genes and the future.”

High-risk children, the Delta variant, despair

A reported piece on what it feels like to stare down another year of high-stakes isolation. “There literally are not words for the frustration but also the fury that I feel that this has gone on as long as it has,” the mother of a high-risk child told the New York Times. “It didn’t have to be this way. It didn’t.”

Easy Beauty: A Memoir

In Pulitzer Prize–finalist Chloé Cooper Jones’s new memoir (out April 2022), the journalist and philosophy professor considers her life as a woman with a visible congenital disability. Cooper Jones is an exacting, sharp writer whose relationship to language is exhilarating to witness. Pre-orders are available here, and in the meantime, check out her 2018 essay about parenting, disabilities and what 6-year-olds notice.

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