Ahead of his meeting with Hamilton and Goldstein, an idea had stuck in his head: With whatever time he had left, he wanted to work to ensure that future ALS patients didn’t have to feel so alone. “There was no question that everyone should have the same chance that I had to ask questions of doctors, to seek the care that we were seeking,” Brian says. “Democratizing that power was a basic thing that we had to do.”
That night, Hamilton couldn’t sleep. The next morning, on the drive to work, she called Brian to keep picking at the threads of what a new ALS foundation might look like, how it might advance the cause rather than duplicate existing efforts. “It was exciting but at the same time a really scary conversation for me,” Hamilton says. “I know how to raise funds for ALS, and I want to reach outside of the ALS community, but it’s scary to give up control. I don’t know how to do that, but this guy might be able to.”
By spring 2018, Brian had the broad outlines of his final act: a foundation to be called I Am ALS. It would raise awareness of the disease. It would centralize scattered resources for patients, which in turn could more easily connect them with clinical trials urgently in need of suitable subjects. And it would bring only new donors into the ALS fight or reengage lapsed donors, rather than cannibalizing a small pool of existing ones. He spent the next few months on planes, meeting with ALS organizations and patients to ensure that their efforts weren’t redundant. “We don’t want to build this thing for the sake of building it,” Brian says.
That summer Brian had lunch with Michael Slaby, who had been chief technology officer for Obama’s 2008 campaign. Slaby pointed to Livestrong for inspiration; his wife is a cancer survivor, and he had seen how patients sometimes feel marginalized. “Most people end up not asking the right questions, not necessarily knowing how to talk about second opinions and drug trials, and miss opportunities as a result,” Slaby says.
Brian enlisted his brother Peter, then a consultant at Bain, to help fit his and Sandra’s ideas into the confines of a donor-friendly pitch deck. That fall, as I Am ALS continued to jell, he called on Slaby again, this time with a job offer: join the organization’s leadership team.
The work went quickly. It had to. They tapped Obama campaign vets like Jeremy Bird, whose company Do Big Things helped build the foundation’s branding and website, while 2008 Ohio political director Michael O’Neil and 2012 reelection communications director Brent Colburn joined a kitchen cabinet of advisers that met every couple of weeks to help shape its message.
The band had gotten back together. But in the midst of the relentless progression of Brian’s disease, of his immutable diagnosis, what mattered most was this group’s particular skills. “You go from zero to 100 miles per hour on a political campaign almost like nothing else,” Slaby says. “And everybody who was helping in those first days, first months, was super comfortable with that: not scared by the lights, not stressed by the pace, not concerned about operating without a net.”
The year 2018 was a whirlwind for the couple: Brian and Sandra, holding meetings, preparing to launch a new organization. Brian and Sandra, crisscrossing the country for diagnosis, for treatment, for fundraising. Brian and Sandra, raising two young daughters. Brian and Sandra, racing a clock they can’t see.
And so, back in Kenilworth, I try to ask Brian the question that has dogged me since our first phone call. It comes out with softer edges than it had in my mind. “You’ve got a choice,” I begin. “‘I’ve got this much time left. I don’t know how much, but I know what the averages are.’ A lot of people end up saying, ‘I’m going to spend time with my family.’ And you still clearly do spend time with your kids. But you travel a lot, and you’re putting so much energy behind this. How do you balance those?”
