A Rare Disease Just "Messed with the Wrong Mother." Now She's Fighting to Beat It Once and For All.

A Rare Disease Just "Messed with the Wrong Mother." Now She's Fighting to Beat It Once and For All.

Amber Freed and Maxwell near their home in Denver, Colorado.

Courtesy Amber Freed

Amber Freed felt she was the happiest mother on earth when she gave birth to twins in March 2017. But that euphoric feeling began to fade over the next few months, as she realized her son wasn't making the same developmental milestones as his sister. "I had a perfect benchmark because they were twins, and I saw that Maxwell was floppy—he didn't have muscle tone and couldn't hold his neck up," she recalls. At first doctors placated her with statements that boys sometimes develop slower than girls, but the difference was just too drastic. At 10 month old, Maxwell had never reached to grab a toy. In fact, he had never even used his hands.

Thinking that perhaps Maxwell couldn't see well, Freed took him to an ophthalmologist who was the first to confirm her worst fears. He didn't find Maxwell to have vision problems, but he thought there was something wrong with the boy's brain. He had seen similar cases before and they always turned out to be rare disorders, and always fatal. "Start preparing yourself for your child not to live," he had said.

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Lina Zeldovich

Lina Zeldovich has written about science, medicine and technology for Popular Science, Smithsonian, National Geographic, Scientific American, Reader’s Digest, the New York Times and other major national and international publications. A Columbia J-School alumna, she has won several awards for her stories, including the ASJA Crisis Coverage Award for Covid reporting, and has been a contributing editor at Nautilus Magazine. In 2021, Zeldovich released her first book, The Other Dark Matter, published by the University of Chicago Press, about the science and business of turning waste into wealth and health. You can find her on http://linazeldovich.com/ and @linazeldovich.

MILESTONE: Doctors have transplanted a pig organ into a human for the first time in history

A surgeon at Massachusetts General Hospital prepares a pig organ for transplant.

Michelle Rose/Massachusetts General Hospital

Surgeons at Massachusetts General Hospital made history last week when they successfully transplanted a pig kidney into a human patient for the first time ever.

The recipient was a 62-year-old man named Richard Slayman who had been living with end-stage kidney disease caused by diabetes. While Slayman had received a kidney transplant in 2018 from a human donor, his diabetes ultimately caused the kidney to fail less than five years after the transplant. Slayman had undergone dialysis ever since—a procedure that uses an artificial kidney to remove waste products from a person’s blood when the kidneys are unable to—but the dialysis frequently caused blood clots and other complications that landed him in the hospital multiple times.

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Sarah Watts

Sarah Watts is a health and science writer based in Chicago.

The World’s First Longevity Charter City: An interview with Niklas Anzinger.

Niklas Anzinger is the founder of Infinita VC based in the charter city of Prospera in Honduras. Infinita focuses on a new trend of charter cities and other forms of alternative jurisdictions. Healso hosts a podcast about how to accelerate the future by unblocking “stranded technologies”.This spring he was a part of the network city experiment Zuzalu spearheaded by Ethereum founder Vitalik Buterin where a few hundred invited guests from the spheres of longevity, biotechnology, crypto, artificial intelligence and investment came together to form a two-monthlong community. It has been described as the world’s first pop-up city. Every morning Vitalians would descend on a long breakfast—the menu had been carefully designed by famed radical longevity self-experimenter Bryan Johnson—and there is where I first met Anzinger who told me about Prospera. Intrigued to say the least, I caught up with him later the same week and the following is a record of our conversation.

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Ingemar Patrick Linden
Driven by a passion to probe the fundamental questions we are confronted with, Dr. INGEMAR PATRICK LINDEN has been on a journey of discovery taking him from Lund University in Sweden, to UCL in London, to University of California, to New York, where he has taught philosophy for almost a decade. Death. It does not get more fundamental than that. One of the ideas that has remained a firm conviction of the author’s since childhood is that we do not have enough time. We are but the beginnings of complete humans, fragments of what we could be. It was the realization that not all share this view, in fact, surveys show that most do not, that inspired, and necessitated, the writing of THE CASE AGAINST DEATH.