“I can’t tell you that you don’t have ALS,” the doctor told him. “But I can ask you this question. If you do have ALS, what do you want to do? You’re 37. You know lots of people. You can make a difference.”
He and Sandra started discussing whether they could start a new venture while juggling the demands of being parents and Brian’s deteriorating health. They did their research too. “We flew around the country and met with different groups to figure out if there was a single group doing this thing right,” Brian told me. “It’s like a presidential campaign, you want to figure out if this is the right thing for you.”
What they discovered was that, for all its lofty purposes, ALS advocacy lacked something fundamental: a basic understanding of how modern D.C. works. Pulling heart strings can get you a press release, but legislative outcomes require sustained engagement, robust fundraising and personal connections.
Sandra, for one, recalled her time on the Hill when advocates would have “fly-in” days to meet staff and push causes. “They’re emotional but that one moment in time doesn’t move the needle,” she told me. Activists were “building the wheel every time.”
The two decided to build something new. On Jan. 22, 2019, they launched I AM ALS. Unlike establishment groups that focused largely on policy, it would be unapologetic in tackling the politics of ALS. And, contrary to what Brian would tell DeLauro, it would place a big bet that victims of ALS could indeed be committed activists, even as they prepared for death.