Sought Out by Science, and Then Forgotten

May 23, 2023

(New York Times) – This Colombian region is now thought to house the second largest extended family with Huntington’s. Its members are of intense scientific interest because they hold clues to genetic modifiers of, and potential treatments for, Huntington’s disease. Yet since Dr. Daza’s untimely death in 2014, they have been cut off from a world of promising experimental treatments, genetic counseling and often basic medical care. Ms. Vásquez, like others in her generation, occasionally calls the disease by its 16th-century name, San Vito, or St. Vitus’ dance. (Read More)