Pippy Rogers, second from left, with her four siblings, who worry that they are at risk for Alzheimer's and are calling for an acceleration of research.

Courtesy of Rogers

In 2007, Matthew Might's son, Bertrand, was born with a life-threatening disease that was so rare, doctors couldn't diagnose it. Might, a computer scientist and biologist, eventually realized, "Oh my gosh, he's the only patient in the world with this disease right now." To find effective treatments, new methodologies would need to be developed. But there was no process or playbook for doing that.

Might took it upon himself, along with a team of specialists, to try to find a cure. "What Bertrand really taught me was the visceral sense of urgency when there's suffering, and how to act on that," he said.

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Matt Fuchs

Matt Fuchs is a health and science writer based in Silver Spring, Maryland. He is a monthly contributor to The Washington Post and has also written for The Washington Post Magazine, WIRED Magazine and Time Magazine, among other outlets. Follow him on Twitter @fuchswriter.

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Katherine Leon and her dog enjoy nice weather in their backyard in Virginia. Leon went from feeling like she was "wandering in the woods" with doctors who hadn't experienced her spontaneous coronary artery dissection, or SCAD, to starting the world's largest registry for research on the condition.

Photo by Evan Leon

When Kimberly Richardson of Chicago underwent chemotherapy in 2013 for ovarian cancer, her hip began to hurt. Her doctor assigned six months of physical therapy, but the pain persisted.

She took the mystery to Facebook, where she got 200 comments from cancer survivors all pointing to the same solution: Claritin. Two days after starting the antihistamine, her hip felt fine. Claritin, it turns out, reduces bone marrow swelling, a side effect of a stimulant given after chemo.

Richardson isn't alone in using social media for health. Thirty-six percent of adults with chronic diseases have benefited from health advice on the internet, or know others who have. The trend has likely accelerated during COVID-19. "With increases in anxiety and loneliness, patients find comfort in peer support," said Chris Renfro-Wallace, the chief operating officer of PatientsLikeMe, a popular online community.

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Matt Fuchs

Matt Fuchs is a health and science writer based in Silver Spring, Maryland. He is a monthly contributor to The Washington Post and has also written for The Washington Post Magazine, WIRED Magazine and Time Magazine, among other outlets. Follow him on Twitter @fuchswriter.

Current research pipelines in biotech could take over a decade unless the heightened attention garners more resources, experts say.

Since March, 35 patients in the care of Dr. Gregory Jicha, a neurologist at the University of Kentucky, have died of Alzheimer's disease or related dementia.

Meanwhile, with 233 active clinical trials underway to find treatments, Jicha wonders why mainstream media outlets don't do more to highlight potential solutions to the physical, emotional and economic devastation of these diseases. "Unfortunately, it's not until we're right at the cusp of a major discovery that anybody pays attention to these very promising agents," he says.

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Matt Fuchs

Matt Fuchs is a health and science writer based in Silver Spring, Maryland. He is a monthly contributor to The Washington Post and has also written for The Washington Post Magazine, WIRED Magazine and Time Magazine, among other outlets. Follow him on Twitter @fuchswriter.