Cynthia Weber with daughter Cassandra and granddaughter.
Photographer: Ryan Collerd/BloombergThe Big Take
A Deadly Legacy Raises the Stakes in the War Over Fast Drug Approvals
For generations, members of one family have died of ALS. A Biogen treatment could break that chain — and escalate a fight over who gets to take experimental drugs, and when.
For years, a family tree spanning two pages of blueprint paper gathered dust at the back of Cynthia Weber’s closet. Going back to a family matriarch born in 1812, it detailed the relationships and causes of death of more than 350 ancestors.
It wasn’t packed away because the family had forgotten about it. Nobody wanted to look at it. Two of Weber’s great grandfather’s cousins died in their 20s, her uncle died at 30, her fourth cousin succumbed at just 25. Three capital letters are scrawled next to their names: ALS.