It’s a Monday morning in late March, and Dan Doctoroff is explaining how he’ll die from ALS. “Respiratory failure,” he says calmly, without breaking eye contact, from his home in New York. “Your diaphragm doesn’t work; your muscles that control your breathing don’t work.”
Doctoroff helped rebuild New York City after 9/11 as deputy mayor, playing a key role in the development of landmarks like Hudson Yards, parks on Governors Island, and Yankee Stadium. But the work he cares about the most—his legacy—is as founder and chairman of Target ALS, a nonprofit that’s pioneered a new collaborative approach to ALS research. Doctoroff’s father died of amyotrophic lateral sclerosis (ALS) in 2004; his uncle died of the progressive nervous system disease in 2010. In 2013, Doctoroff launched Target ALS “because it was personal,” he says. After he was diagnosed with ALS in October 2021, he quit his start-up job to focus full-time on making a difference in the ALS world.
[time-brightcove not-tgx=”true”]Over the past decade, Target ALS has funded more than 600 research grants, raised $330 million for ALS research, and launched seven clinical trials; Doctoroff is particularly proud of fostering collaboration between academia and the pharma and biotech industries. In March 2024, the nonprofit launched a first-of-its-kind data portal that will provide researchers worldwide with datasets and analysis tools they wouldn’t otherwise have been able to access.
Looking forward, he hopes Target ALS will play a role in finding treatments that help the 1 in 400 people who has ALS live long lives with the disease. The current prognosis is two to five years after diagnosis; Doctoroff is at the 2½-year mark. “I’m in a hurry,” he says. His voice is weakening and he spends most of his time in a wheelchair; he’s losing function in his hand. But he feels good about his life and doesn’t harbor any regrets. “The feeling is now that this is a tractable, solvable disease,” he says. “I don’t know when that will be—it won’t be in time for me.” But it’s on the horizon, and he’s bolstered daily by his purpose, to help achieve a brighter future for people with ALS and everyone who cares about them.
Correction, May 6
The original version of this story misstated the amount Target ALS has raised. The organization has raised $330 million since 2013, not $64 million.