The foundation raises research funds for the Robert Packard Center, the cutting-edge ALS research center at Johns Hopkins University. He and Simmons are working hard to meet their first goal of raising $1 million by year's end. Mark Ernst, who worked with Basten for 12 years at AmEx and is now president and CEO of H&R Block, is impressed but unsurprised by Basten's new venture. "Most people, if they were to find themselves in Bob's position, would spend time catching up on all the things they've deferred in life. But he's settled enough with the choices he's made, the relationships he's formed, to be able to go off and start his next big thing."
He has thrown himself into that next big thing with all his remaining energy. Basten is a relentless optimist, but he's realistic about his situation. "I'm not so naive as to assume that I'm going to live," he says. "But I do know that acting with purpose is going to help me live. . . . If I quit, if I have no purpose, then I won't last long."
Basten now spends most of his time at home, 15 miles north of Minneapolis. His family is adjusting to his regular presence after getting used to him as a "part-time weekend guy" who spent work weeks in Chicago. As his illness progresses, Basten will spend even more time at home, relying increasingly on his family for assistance. This past summer, Emily, 16, and Jack spent many afternoons helping out Dad--typing emails, sending faxes. "It's been a real adjustment," says Faith, Basten's wife of 18 years. "We're all used to being so independent."
Like all ALS patients, Basten will gradually slide toward complete de-pendency. Over the course of the past year and a half, he has become increasingly weaker, losing more and more muscle control. He can't use his arms-- or the hands that used to fire off emails on a BlackBerry, hold a cell phone, and command a steering wheel at the same time. He's been in a wheelchair since May. His speech becomes slurred if he talks for too long. "I never know what I'm going to lose," Basten says. "I just know that I'm going to keep losing."
He still goes to the office every now and then. And back in Chicago one afternoon in August, Basten thinks about what people might say about him when he's gone. "I want people to say, 'He was not a quitter. He continued to do what he does. The guy, in the face of the coldest reality, didn't lose his sense of humor or dignity or grace that he gave others.' "
Later that same afternoon, Basten leans forward to get a better look at his laptop as Simmons gives him a tutorial on a new piece of software that will allow him to type even though he can no longer control his hands. "See, you place this small reflector dot anywhere--on your glasses, forehead, a shoulder," says Simmons, nodding up and down as the little dot on the bridge of her sunglasses, connecting with an infrared camera on the laptop, punches virtual keys on the screen. Basten says nothing, just listens and watches. Then he finally speaks: "It's liberating."
Christine Canabou (ccanabou@fastcompany.com) is a Fast Company staff writer.
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