Welcome back to Must Reads, our weekly roundup of what we’re reading and loving. Before you dive in, don’t miss Natalia Antonova on who to blame for the shutdown.
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One Couple’s Tireless Crusade to Stop a Genetic Killer (Kelly Clancy for Wired)
When an incurable genetic illness crops up in your family, do you get tested to find out if you’re a carrier? And if you are, what do you do next?
With the diagnosis in hand, the Vallabhs made the decision to take Kamni off life support. The family gathered around her for a final goodbye. Sonia had braced herself for the moment of her mother’s death but found that, after months of uncertainty, it came as a relief. This was partly because, once Kamni was gone, long-absent support flooded in. Losing a loved one to dementia is mysterious, unsettling. Death, on the other hand, is binary. We all know the social conventions—cards and condolences, a shared mourning display. Several hundred people attended Kamni’s funeral. “It’s that kind of town,” Sonia says. “It’s also who my parents were in that town.”
Gene Therapies Could Fix Incurable Diseases — But There’s One Big Problem (Jovana Drinjakovic for Mosaic)
Gene therapy is the wave of the future, but, surprise, the human body isn’t always interested in cooperating.
Luk Vandenberghe, a gene therapy researcher and associate professor of ophthalmology at Harvard Medical School, says that immunity to AAV is gene therapy’s Achilles heel. These are “incredibly potent therapies,” he says, “but they are only going to be relevant to a sliver of the population.”
How Henry Heinz used ketchup to improve food safety (Deborah Blum for National Geographic)
Food safety is on a lot of minds at the moment. Here’s the forgotten story of a man who bucked trends at a time when a lot of packaged food was extremely dangerous.
Heinz’s stance was a shock, especially to his fellow industrialists. He refused to fall in line with other U.S. corporations, which were mostly moving to block any effort to establish food and drink standards. And to understand that, we need to take a look at the man himself as well as the successful businessman.
Who pushes the button? (Rachel Plotnick for Aeon)
This will change the way you think about pushing buttons.
By literally and figuratively severing his connection to the buttons on his desk, Carey awakened to the error of his ways and embraced the American ethos of the ‘self-made’ man: ‘It was going to be worth while; out there, where men made themselves; where they held their destinies in their own hands; where merit, alone, won; and – where no one ever pushed buttons.’
The Empty Mason Jar of the Influencer Economy: The Case of Caroline Calloway and her Creativity Workshop Tour (Kayleigh Donaldson for Pajiba)
Instagram influencers are a fascinating and complicated community, and we love thoughtful longform journalism exploring their culture.
While all of this went on, Calloway strived to create her own brand of ‘authenticity’. She was ‘real’ for pulling out of a 6 figure book deal. She was true to herself for refuting a narrative she had created for herself for personal and financial gain, one that relied heavily on fetishistic notions of the British class system and academic elitism. She was a real artist for never actually making any art. This is the Instagram curse in many ways: The hunger to be an influencer without doing the work of real influencing.
Photo: Mathias Appel