“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.
The group would provide support and resources for those newly diagnosed. It would fund existing research and demand lawmakers spend more too. But the holy grail would be to convince the government to allow ALS patients greater access to clinical trials and to help pick up the tab, which lawmakers and federal agencies had been reluctant to do out of concern that it would be too expensive, that the payoff would be too uncertain, and that they would lure patients away from existing studies if new and potentially ground-breaking ones became available.
“If you testified in Congress and the question was, ‘Give us a complete rundown of all the progress we’ve made on ALS and other neurodegenerative diseases since Lou Gehrig’s [1939 “luckiest man”] speech,’ the testimony would not take long,” said Rep. Mike Quigley (D-Ill.), one of the members with whom Brian worked most closely on the legislative push. “The fact is, we needed to pivot and take a different direction.”
To start the pivot, Brian turned to a kitchen cabinet of unpaid advisers who helped him stand up I AM ALS and connect him with key players across D.C. One of the first was Michael Slaby, who had been chief technology officer for Obama’s 2008 campaign, and currently serves as the group’s interim CEO. He enlisted Ben LaBolt, Obama’s press secretary for the 2012 campaign, to help with comms work, held semi-regular calls with other Obama alums, and utilized his connections to the Obama Foundation to get the former president to put out a video touting I AM ALS as a philosophical extension of the Obama campaign itself.
For the group’s board, he got, among others, Dan Tate, an ALS patient himself and a founding partner of the lobby shop Forbes Tate Partners, which on a pro bono basis helped coordinate I AM ALS’ grassroots and Hill strategy. And he hired a range of officials who worked at the intersection of biomedical research and politics for the day when he himself would be gone.
“One of the biggest difficulties for ALS groups is that when the person who founded the group gets sick, the group falls apart,” Brian told me.
He hired several lobbying shops, including Winning Strategies Washington. At the firm’s office in downtown D.C., Brian would occasionally work. In one session — which he let me sit in on before the firm’s staff kindly asked me to leave — the granularity of his involvement was on full display. He didn’t just want medical experts to accompany advocates to the Hill, he wanted them to have ready data for the question he and Sandra knew they’d get by some time-strapped legislative assistant: “Your story is moving. But how is it different from story 1, 2, 3, and 4?” He wanted to target lawmakers who worked on defense budgets by enlisting veterans who were suffering from ALS. (According to several studies, veterans are 1.5 to 2 times more likely to get ALS than those in the general population.) He wanted to underscore, ad nauseam, that ALS research could unlock cures for other neurodegenerative diseases, like Parkinson’s and muscular dystrophy. Don’t ask for a moonshot, he stressed, ask for scientific discovery.
The group helped score some early victories, including getting the Pentagon to double its investments in ALS research from $10 million to $20 million, and then to double it again to $40 million. They created an ALS Caucus on the Hill. Brian personally delivered a letter and accompanying stack of paper signed by 10,089 ALS activists to the FDA demanding it publish long-promised, revised guidance on how ALS clinical trials could be designed. The agency subsequently did it.
Through it all, Brian seemed to be everywhere. Over coffee one day he casually dropped that he was in a rush to talk with David Bradley, the D.C. media mogul and founder of two of Washington’s top consultancies. At other times he was off to chat with top officials at the National Institutes of Health, or with Priscilla Chan, Mark Zuckerberg’s wife and head of the Chan Zuckerberg Initiative, at the Aspen Ideas Festival, or with Donald Trump’s FDA commissioners: first Scott Gottlieb and then Stephen Hahn.
“A human rolodex,” is how Eric Schultz, another Obama vet who has worked informally with Brian put it. “But it didn’t go to waste. A lot of people want that at their disposal for prestige purposes. But that wasn’t Brian and Sandra.”
The breakneck speed seemed unsustainable. But Brian found it calming to be working, especially around other patients, where conversations didn’t necessitate explaining what ALS was and how it affected people. He felt, in a way, responsibility toward them — not just because he had a skill set and connections that could be used to improve their lives but because, for the time being, he was able to stand and talk and do things that allowed him to fit in more easily among the rest of society.
But he also knew his clock was ticking. As we sat at a coffee shop in D.C. during one of those early Hill blitzes, he mentioned the awe he felt watching other prominent ALS activists who were more stricken by the disease than he was.
“You know you will be there,” Brian said. “But you don’t think about how you will be when you’re there.”
In June 2020, ACT for ALS was formally introduced.
Not surprisingly, Brian had done his homework. He scheduled a meeting with Sen. James Inhofe (R-Okla.) because a legendary high school football coach in his state, Allan Trimble, had recently announced that he too had ALS. He worked with Sen. Lisa Murkowski (R-Alaska) because her cousin’s husband had died of the disease. He collaborated on the idea of the ALS Caucus with Rep. Jason Crow (D-Colo.), who lost a cousin to ALS. He co-wrote a Fox News op-ed with Rep. Jeff Fortenberry (R-Neb.), whose wife’s brother had the disease and who would be, along with Quigley, the main driver of the bill.
When Brian wasn’t meeting with lawmakers personally, his group and the activist community was pushing them, oftentimes aggressively. One Republican Hill aide described it as “a blowtorch of advocacy.”
“You have to understand,” Fortenberry told me, “When it comes to the small disease category, for an office to dedicate itself to it is a huge ask. We don’t have unlimited resources. Other offices might be sympathetic. But they don’t have the capacity to deal with this either. All of these things create hurdles and roadblocks. You have to have this almost unimaginable alignment for this to happen. And ultimately it takes perseverance from people like Brian.”
With Sandra as a media sherpa, Brian turned himself into an avatar for the cause. He did national TV, used Twitter vociferously and, after sitting for another magazine profile while he and I were talking for this piece, suggested as a fall back that we simply write a book. When he told me, more recently, that he had sat down for yet another magazine profile, his consolation prize was only slightly different. “If we don’t do the piece,” he wrote, “I got 2 book offers today.” In December 2019 he showed up in Times Square, as I AM ALS took over two massive billboards there that flashed signs like “ALS IS OVER If you want it” and “F*CK YOU ALS.” The billboard takeover was accompanied by an over-the-top Jerry Bruckheimer-like video promoting their promotion. In May 2020, Brian texted me that his organization had also gotten $350,000 to make a documentary, which is now 90 percent done.
It wasn’t just press for the sake of it. Sandra wanted to change the very perception of a classic ALS story from tragic into hopeful. “No one is going to engage and help us if you shut them down with a depressing story line,” she explained.
As his public persona grew, so too did the expectations and demands around him. At one meeting, Rep. Eric Swalwell (D-Calif.) — whom Brian had gotten to know through mutual friends — called him the “face of ALS.” Brian reacted nonchalantly to the compliment. But after Swalwell left the room, he showed some discomfort. The campaign wasn’t his alone. And while he desperately wanted to change how the government fought diseases like the one had, it was coming at a personal cost.
“You know you’ve been given this honor to be in this room but then you have a moment that I would rather be anywhere but here,” he told me.
Brian’s body was deteriorating. He was using a cane and would soon switch to a wheelchair. As the legislative process kept moving — with more co-sponsors signing on to the bill and negotiations over the contours of the expanded access program progressing — he began losing his ability to speak. Sandra stepped into the breach. On July 29, 2021, she delivered his testimony for him at a hearing before the House Energy and Commerce Health Subcommittee. She called it, “our closing argument for our lives.”
View original Post