Living with Fabry disease, a condition that causes chronic pain

JackJohnsonwasdiagnosedwithFabrydiseaseatage7.Photoillustration:CaseySheneryforSTATForJackJohnson,ge NathanHoward/GettyImagesReflectingonthisfirstanniversaryoftheSupremeCourt’sdecisioninDobbstooverturn




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ACT UP protest
A demonstration marking the 10th anniversary of the formation ACT UP, in New York. Mark Lennihan/AP

WASHINGTON — Next Wednesday, a cadre of ALS patients will gather for a protest outside the FDA’s headquarters in suburban Maryland with a clear message: “No More Excuses.”

The rally is being organized by a ragtag group of ALS patients who connected mostly through Facebook, and it’s far less a production than other efforts like the 2014 ice bucket challenge that swept around the world.

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These protesters haven’t even established a formal organization or a website; some said they’ve never even been to a protest. There’s nary a poster board in sight, yet.

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