Appalachia’s ALS Ancestry Project

Only 10% of amyotrophic lateral sclerosis cases are genetically inherited, but 2 Appalachian families carrying a rare ALS-causing genetic mutation offer researchers the opportunity to investigate why some family members get the disease and some do not.

This beautifully crafted longread follows a neurologist and a genealogist from the University of Kentucky as they trace the mutation back to 2 neighboring families in the mid-1800s in Ewing, Virginia. Driving around the nexus of Kentucky, Tennessee and Virginia, they attend family reunions and visit patients, collecting blood and skin samples and adding data points to gain a better understanding of ALS’s finicky manifestations.


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