Brian Wallach's left hand cramped and he dropped his pen. Ten minutes later, it happened again. Annoying. He'd spent months preparing for this case. He'd joined the US Attorney's Office, a dream job, almost three years earlier. He was in the midst of prosecuting the surviving member of a group that had smuggled guns into Chicago from Indiana. The trial was a few weeks away. And now these cramps. He chalked it up to stress and moved on.
That was April 2017. On July 31, Brian and his wife, Sandra Abrevaya, had their second daughter, jaundiced but otherwise healthy, so all three stayed in the hospital a week. That's when Brian started coughing, barking, unable to finish a sentence. Sandra told him to see a doctor, so he did. He ticked off every symptom he could think of: the cough, the cramp, and also a muscle twitch in his left arm.
That physician sent Brian to a neurologist the next day. The neurologist talked through Brian's symptoms, looked at his tongue—it was subtly undulating, something Brian hadn't noticed. The doctor then told him the news: He likely had amyotrophic lateral sclerosis. ALS. Lou Gehrig's disease. If he was right, the doctor said, Brian had approximately six months to live.
That was the same day Sandra and their daughter had come home from the hospital. Brian barely knew what ALS was. It seemed impossible that it would have found him, much less imposed so strict a deadline.
Brian's first call on the drive home was not to Sandra but to Nick Morris, a neurologist at the University of Maryland and a friend from college. Before he could tell Sandra the news, he needed someone to help him process it. Nick obliged, explaining that there's no one definitive test for ALS—in fact, a conclusive diagnosis often requires a monthslong process of elimination.
Sandra called in the middle of that conversation, and Brian switched over. She caught something in his voice. No, everything wasn't OK, he told her. No, he couldn't say it over the phone. Yes, he was on his way home.
Sandra paced while the girls napped. When he arrived she ran out to the car and jumped into the passenger seat. Nick was still on speakerphone. “I need you to get off the phone because I don't know what's going on,” Sandra said to them both. And then Brian told her.
“That's not that bad, right?”
“No,” Brian replied. “It is.”
I'll spare you some suspense. The neurologist was right about ALS, albeit for incomplete reasons, but he was wrong about the timetable. Three years later Brian is still alive.
ALS is a cruel disease. Motor neurons in the brain and spinal cord gradually degrade and then die, robbing the sufferer of control over their muscles. Eventually patients cannot move or speak or eat or breathe. There is no cure and, except in a minority of inherited cases, no known cause. Once symptoms appear—in an arm or a leg or a hand—the typical survival rate is three to five years. It is fatal in virtually all cases.
Brian was one of roughly 5,000 people in the US to receive an ALS diagnosis in 2017. He's one of more than 16,000 patients living with the disease in the country today. Each has faced some version of Brian's moment in the car: mortality in sharp relief. A loved one at home who doesn't yet know. A decision about how to spend whatever time they have left.
Brian and I have known each other for three decades. Our lives have played out as variations on the same theme: good schools, bad work-life balance, two kids, settled down hundreds of miles from where we grew up. He and Sandra told me this story when I visited them last spring. We were sitting in a bedroom addition of their suburban Chicago home, built with a ramp for the inevitable day that Brian's disease will confine him to a wheelchair.
Even now I keep coming back to Brian driving himself home from that doctor's visit. I try to envision how I might have felt in those first moments alone, after the life I'd built started a slow dissolve. I can't. But for the past 18 months I've watched Brian devote whatever time he has left to fighting a disease that will inevitably take his life. To creating tools for others to fight it. To funneling a lifetime of experience and connections and determination into a singular cause while he still can.
I don't know what I would have done after leaving that neurologist's office. I don't think anyone could. But I do know that even the most optimistic boundaries of my imagination can't match what Brian has already achieved.
As I rode the Metra train from downtown Chicago to the suburban Kenilworth stop to meet Brian in the spring of 2019, I tried to think of the last time we'd seen each other. The first was easy: fourth-grade orientation at St. Albans School in Washington, DC, where we'd been classmates until college. I had orbited a group of friends that included Brian; we were close enough to ride the same party bus to prom but not to stay in regular touch since.
Most of my memories of Brian from those days are broad and fuzzy, an impressionist canvas of penny words like smart and competitive, kinetoscope footage of five or six teenage morons blustering in the A/V room after school. One image stands out more sharply: our senior spring, Brian edging milliseconds closer to the school record in the 400-meter run, a race that requires maximum effort for longer than your body is designed to give it. I had forgotten if he'd managed to break it.
Scrolling through Facebook I found our last encounter, down to the day. There's a group shot, a baker's dozen of us wearing matching camouflage T-shirts with 10.12.07 printed on them. We're at a bar in DC, celebrating the return of our friend Sam from two tours with the Marines in Iraq. In the photo, Brian and I are standing next to each other, his arm slung over my shoulder. I remember being glad for the excuse to see old friends. It somehow hadn't occurred to me then that Sam might not have come back alive. Mortality was an abstraction, just out of view.
As I headed down Brian's tree-lined street near the train station, I ran into him outside, walking with Sandra and his 16-year-old hound mix, Hunter. He looked taller and grayer than in that photo. He also moved at a gingerly pace; Brian later described it as “the gait of an 80- or 90-year-old man.” I'd talked to him on the phone ahead of my visit, so I knew his voice had picked up some gravel. In person I could see that speech also took effort, the muscles of his mouth and tongue in quiet rebellion.
Brian and Sandra moved from the city to Kenilworth in the fall of 2018. They live just a few doors down from Sandra's parents, in a house gut-renovated with Brian's ALS in mind. In addition to that bedroom, they expanded each doorframe, hallway, and passage to accommodate a wheelchair. They built a garage big enough for the van that Brian will need to ride in, and wired the house so he can control lights and such from a tablet. The bathrooms have motion-sensor sinks, because Brian will be unable to turn knobs. Every aspect of the house anticipates immobility.
We sat across from each other. Brian filled in the gaps of the life I'd caught glimpses of on social media over the past decade, with occasional interruptions from Hunter. Yale undergrad, Georgetown law. A summer as an associate at powerhouse law firm Skadden Arps, before heading to New Hampshire to work for the 2008 Obama campaign. When the general election came around, he became political director for the state.
That's where he met Sandra, who had left her job as Illinois senator Dick Durbin's press secretary to work in communications for the Obama campaign. As happens in political foxholes, they started dating. After stints in the private and public sectors, they reunited at the White House, where he served as senior vetting counsel and she as associate communications director. And then back to Chicago, where Brian reentered corporate practice before taking the assistant US attorney gig. Sandra now works as president of Thrive Chicago, a youth-focused nonprofit.
The trajectory of Brian and Sandra's life, in other words, seemed charmed, limitless. “I had a life that I loved,” Brian told me. “And that disappeared.”
But not all at once. Brian spent the months after that first neurology exam undergoing multiple blood draws, MRIs, and a spinal tap. Then there was the electromyography, or EMG, where a needle, inserted into various muscles, spots abnormalities in how your nerves conduct electricity and how your muscles respond. The unspoken hope throughout: that this was something—anything—other than ALS. Something they could fix.
By November, Brian had found his way to the office of Jeffrey Rothstein, a prominent ALS specialist at Johns Hopkins in Baltimore. “Nobody's going to say this right now, because you're still doing testing,” Sandra recalls Rothstein saying. “But I've seen thousands of cases of ALS, and you have ALS.”
The battery of tests would continue until the following March. But Rothstein's words further convinced Brian to commit to a regimen of the only two drugs approved by the US Food and Drug Administration specifically for ALS: riluzole, greenlit in 1995 and available as both a pill and an oral suspension; and edaravone, better known by its brand name, Radicava, which had just gone on the market. Neither is believed to add more than an extra year of life expectancy.
That winter was a long one. Brian was still working cases, and he was sleeping poorly. They had an infant. The Chicago chill set in. “It was a very hard time,” Sandra says. “And we had a lot of fear. Is this a healthy situation for him to stay at this job, as much as he loves it?” Sandra also worried that, once they went public, Brian's disease would shape the contours of every conversation. That it would take away whatever was left of normal.
In early December, Brian flew out to the International Symposium on ALS in Boston with his mother and Sandra's parents. He and Sandra had told only a few close friends and family about the diagnosis. Some of them had urged both to think about becoming an advocate for others with ALS. Brian is relatively young and well-spoken. He has resources and a network of people willing to help. He checks a lot of boxes. And while at first the thought of extending himself even further seemed unlikely, he gradually started to warm to the idea.
And so he reached out ahead of the symposium to a Cambridge, Massachusetts-based group called the ALS Therapy Development Institute. ALS TDI operates under a unique structure: Rather than raising money to distribute to outside researchers, it funds its own lab with revenues of over $13 million a year. “They came up through the ranks as kind of these rebels,” Brian says. “They had an ecosystem that could exist independently of others.”
Their reputation for a patient-centric approach appealed to Brian, who had come to believe in the power of community organization during his Obama years.
He met with Carol Hamilton, ALS TDI's senior director of development, and Rob Goldstein, its vice president of ALS community engagement at the time. Hamilton met Brian and his mother in the lobby of the hotel where the conference was being held. “I remember having to walk away,” Hamilton says. “He reminded me of so many people I went to college with, so brilliant and lovely. And he had just had a baby and is bravely standing there where he's going to hear horrific stuff about this disease.”
After the conference Brian and Sandra started telling more people; keeping the diagnosis to themselves felt like living in alternate reality. Brian has always been social, the connective tissue between friend groups even in high school. By now he had committed to throwing himself into not only his own treatment but the fight against ALS more broadly. “We initially assumed that we would find an organization out there that we loved and we would tie ourselves to it,” Brian says. “But every time I met with a group I came away thinking: This group does an amazing thing, but they're not the only group out there. So what is it that they're missing, that these other groups are missing, that we could help with?”
That February, Brian returned to Boston in search of an answer. He toured the ALS TDI lab, then commandeered a conference room in the early afternoon with Hamilton and Goldstein. They stayed well past sundown, talking through the history of ALS advocacy, its politics, what had already been done, and what new ideas might work.
By now Brian had seen firsthand some of the gaps in the framework of ALS treatment and support. There was the sense of isolation, that going public would upend his and Sandra's world. And more practically there was the information vacuum, especially around clinical trials. “Almost every time I went to go see a doctor—the best in the world—we would have to bring information about trials with us to discuss with them,” Brian says. Most ALS drug trials set various limits on who can participate, based on age, symptom duration, and so on. They can require expensive, exhausting travel for uncertain gains.
Brian had recently gone to see Senda Ajroud-Driss, a neuromuscular medicine specialist at Northwestern University. “It's amazing that you come here with your family and that you come armed with so many things to ask me about,” he recalls her telling him. “And I think about other patients I've seen who are 20 years older than you, have no family, no resources, and I think about what they will be able to do in this fight and what you can do.”
It's easy to get lost. It's easy to give up. “The questions I kept asking were, why do patients feel so disempowered in this fight?” Brian says. “Why do they feel like they have to live in the shadows? Why do they feel like they can't come out and actually be public about this? Why do they feel like they don't have the support to do what they want to do, to talk about their life as it was and as it is?”
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?”
When I listen back to the recording, I catch myself choking up. I also hear myself not asking the question hovering just underneath this one, about mortality and family and fear and time. Brian manages to answer both.
“There's nothing in our lives that says we're supposed to be here forever,” he says. He reminds me that his father had died unexpectedly when he was in college. “We expect we're going to get certain things in life, but we're never actually promised them. And I was given a chance to know that there will be an end coming at some point in time. I had the option to either be pissed off as I went toward that end or to say I'm going to enjoy this and embrace every minute that I can. There may come a point down the road that I get upset, but if I'm angry now I miss whatever time I have left.”
On January 22, 2019, Brian and Sandra launched I Am ALS.
I'd met with Brian and Sandra on a Sunday. Early Tuesday morning, I joined Brian at the Metro Infusion Center for his Radicava treatment. I got there a few minutes late; he was already seated near the end of a row of oversized recliners, drugs trickling in through a port in his chest. The chair next to him was free.
Radicava treatment starts with infusions on 14 consecutive days. From there, patients get infusions on a regular cycle: 10 out of 14 days on, then 14 days off, repeat indefinitely. Brian spends much of his time on planes, but he plans those trips around Radicava doses.
His care is overseen by a few doctors, including Rothstein at Johns Hopkins and a local team at Northwestern in Chicago, but primarily by Merit Cudkowicz at Massachusetts General Hospital. (It's an elaborate setup, one that requires even more travel and constant communication.) As I sat with him in the neighboring infusion chair, I noticed a black carry-on-sized backpack that Brian had brought with him.
After he finished—it takes about an hour—he unzipped it for me. Inside, a mobile pharmacy. Nuedexta, to help control the fits of laughing or crying, known as the pseudobulbar affect, which can accompany neurological conditions like ALS. Baclofen, for muscle stiffness. Basis, Nexium, vitamin D, Acetyl-L-carnitine, TUDCA, Ibudilast. This pharmacopoeia goes wherever Brian does. It may or may not be helping. “What you end up doing is taking your best guess at which facets of the disease you're combating through which medications,” Brian says.
Despite that uncertainty, every ALS patient, researcher, and advocate I spoke with pointed to the drug pipeline as a source of optimism. Even just a few years ago “there was nothing really groundbreaking or revolutionary,” says Maura Musciacco, senior director of neurology and ophthalmology at the data analytics company GlobalData. But today she sees “quite a lot more exciting things happening,” including seven ALS drugs in Phase III (large, often randomized studies) and another 27 in Phase II (smaller-scale trials testing mainly for efficacy and side effects) as of August 2019.
The viral Ice Bucket Challenge in 2014 deserves some credit; of the $115 million raised, at least $90 million went directly to research expenditures, according to an accounting maintained by the ALS Association. But while the Ice Bucket Challenge dramatically increased awareness for ALS, the primary catalyst for that research boom dates back to 2011, when scientists first pinpointed a genetic mutation that links an inherited form of ALS and a condition called frontotemporal dementia. FTD is three to four times more common than ALS in the US, meaning certain types of ALS research suddenly had implications for a much broader group of patients.
Between 2013 and 2019, the NIH increased its investment in ALS research from $39 million to $105 million. “The quality of that science has seen a huge jump in the last five years,” Rothstein says.
That doesn't mean a silver bullet is in the offing. ALS is a strikingly heterogeneous disease. About 5 to 10 percent of cases are inherited, with a dozen or more potential gene mutations triggering the progression. The remaining 90 to 95 percent of cases have no single confirmed cause. Effective treatment would likely need to be tailored for each type of patient. Still, the recent increase in investment has enabled more novel approaches.
Stanley Appel has led the ALS Research and Clinical Center at Houston Methodist Neurological Institute since 1982; using ALS Association and other outside funding he ran a trial of an immunotherapy treatment that he hopes will ultimately slow ALS progression. “When we first started seeing this my colleagues said, ‘Stan, you're outside the box,’” Appel told me last summer. “And I said, ‘Well guys, look very carefully. The box is empty.’”
Part of Brian's work has been helping to fill that box. Tensions between the ALS community and the FDA have historically run hot, in part due to the agency's failure to provide definitive guidance to pharmaceutical companies on how best to develop therapies. Without that clarity, advocates have argued, drug companies are hamstrung in getting treatments to patients fast and effectively. Last July, Brian hand-delivered two petitions to the FDA: one from I Am ALS urging action on releasing the guidance and another created by a group of patients calling for the agency to approve pending treatments more quickly. Between them, the petitions totaled 20,000 signatures. The FDA released the guidance in late September.
I Am ALS doesn't deserve all the credit for this; the ALS Association has hounded the FDA for years on the same topic. But Brian does know how to open doors in DC. On a trip to the city last spring, he met with friends who had friends in the FDA's legislative affairs office, who set him up with the commissioner's office, who introduced him to the people working on ALS drugs. “I was talking to every aspect of my network to see who could help us connect with people,” Brian says. With that access he not only presented the petitions but also brokered a meeting between FDA officials and BrainStorm Cell Therapeutics, a New York company whose stem-cell-based ALS treatment has shown promise. By February, BrainStorm says the FDA had agreed to explore ways to expedite the review process for the Phase III trial of the company's NurOwn therapy. (An FDA spokesperson declined to comment on the meeting with BrainStorm but said the agency is committed to expediting drug development for serious conditions like ALS.) “Brian Wallach has done in just one year what other organizations take a decade to do,” says BrainStorm CEO Chaim Lebovits. “He understands the system. He's not bitter. He's fighting.”
Brian had done so much so quickly. But I Am ALS still felt amorphous, its goals broad enough to lose definition at the edges. It wanted to be more than good. It wanted to be different. I couldn't see yet how it was.
Walking with Brian to an Equinox gym—he still works out with a personal trainer—I asked him about the 400-meter record in high school. He hadn't broken it after all. But it turned out I had also forgotten the backstory. Brian had been a baseball player until a shoulder injury sidelined him the winter of sophomore year. By spring he had reinvented himself as a sprinter.
The truth is that Brian is both exceptional and a type. The recent past has produced no shortage of competent, resourceful, driven people who, when faced with an ALS diagnosis, dedicate whatever time and energy they have left to combating the disease. Jay Fishman was the CEO of the insurance company Travelers until his ALS diagnosis in 2014; he quickly helped raise $20 million to fund Answer ALS, an organization—headed by Jeffrey Rothstein—that applies big data to the search for underlying causes. After former NFL safety Steve Gleason was diagnosed in 2011, he and his wife founded Team Gleason, which focuses in part on the development and promotion of assistive technologies for ALS patients. And there's former college baseball star Pete Frates, who helped the ALS Ice Bucket Challenge go viral. (Frates died in December 2019, Fishman in 2016.)
ALS foundations in the US number in the dozens, not even counting the many local chapters of the ALS Association, the nation's largest ALS advocacy group. At first blush, this seems promising: The more people engaged in the fight, the better. But many advocates view new entrants in the field with a certain wariness. Unless you're also broadening the donor pool, the same money just gets spread less efficiently. Each group also has its own priorities, be it early-stage research or palliative care.
No one understands this dynamic more deeply than Avi Kremer. Diagnosed with ALS in 2004, Kremer launched the ALS nonprofit Prize4Life in 2006, which dangled two separate million-dollar payouts for promising ALS research. In November 2018 he dissolved the organization, opting to team up with the ALS Association.
“The fragmentation in the ALS landscape hinders the quest to find a cure, because when different patient organizations compete, efficiencies are not optimized,” Kremer wrote in a letter to Prize4Life constituents at the time. In that, an implicit lesson: The very existence of I Am ALS could dilute the movement Brian and Sandra were trying to cohere.
I spoke with Kremer over Skype in August; he lives in Israel and is gaunt and immobile due to the progression of his disease. Unable to speak, he communicates with an eye-gaze device, painstakingly spelling out words by shifting his focus over a digital keyboard. The muscles in his neck flutter sporadically; his head lolls from side to side. A short reply can take him 10 minutes to compose.
“I realized that it's not efficient to have a CEO, VP of development, VP of marketing, office manager etc if you are not a big player,” he wrote. “It's a waste of precious donors $$.” Kremer told all of this to Brian, too, back in 2018.
It's a question I kept returning to also, especially in those early months of I Am ALS. But Brian has never been a vanity-project person, especially at such a cost: time away from his family, hours on planes and conference calls that could be spent doing literally anything else.
As it happens, he's more aware than anyone that he's part of a pattern. He also feels equipped to break it. “There have been a number of incredibly charismatic patients who have come into the fight before,” he told me. “When their disease takes a turn, the operation slows down by necessity. And so at the start of our story, a critical idea behind it was, can we build something that's about a community and about a larger idea, how you rewrite a narrative of what it means to be an ALS patient? And if we can, that's really transformative.”
Stand-alone ALS groups have formed an ever-broadening archipelago, within sight of each other but too often out of earshot. I Am ALS doesn't want to be another island. It wants to build the bridges. “Currently I'm a skeptic,” Kremer typed from his kitchen. “But if someone can do it, it's a patient like Brian.”
Brian and I are approaching 40. Mortality is no longer so abstract. Our high school classmate Alex Maasry died three years ago. Brain cancer. Jay Bloomer was the kind of guy who put a room instantly at ease; he'd gone to college with my wife, Rachel, and married her best friend. He was diagnosed with lymphoma in April 2019; he died in October. “You realize, when you have a moment like this, that success means so many things, and that we sometimes put a very arbitrary limit on them,” Brian told me in March. “When my time comes, whenever that is, I want people to be able to look back and say, what that guy did, it wasn't just for him. It was for others.”
In late September, the day after the FDA released its revised guidance, I met Brian in Washington, DC. I Am ALS had also just announced its new CEO, Danielle Carnival, a neuroscience PhD who had spent seven years at the White House, including five years at the Office of Science and Technology Policy. (I Am ALS had seven full-time employees as of May—not counting Brian and Sandra—and hopes to add two more. It's built to continue long after Brian can no longer contribute.)
That flurry of activity coincided with the reason Brian and I had traveled to our hometown: a meeting he convened of more than a dozen of the largest ALS foundations and funders in the US. They had gathered as a step toward more cohesion, or at least coordination of efforts. In unity comes strength, like Aesop's bundle of sticks.
The airy conference room had ample seating for a couple dozen attendees, with tables arranged in groups and a breakfast bar against the wall. Merit Cudkowicz and Jeffrey Rothstein were there. Representatives from Team Gleason and ALS TDI played icebreaker games encouraged by two professional facilitators—“Find one thing that everyone at your table has in common”—with NIH administrators and ALS patients. Brian sat next to Amelie Gubitz, the program director in the Neurodegeneration Cluster at the National Institutes of Health.
Brian's disease had progressed since I'd seen him last; his cadence was more halting and it took more effort to talk. I realized that I'd frozen him in my mind in March, but that's not how ALS works. It's a train that doesn't slow down, makes no stops. I had talked to enough experts to know that. I hadn't wanted to believe it.
I stepped out after the introductions, at Brian's request. Getting the group's OK to have a journalist there at all had required negotiations on his part. The ALS community wants attention but is also wary of it, especially when it comes to its own conflicts and sensitivities. When the moderators asked for questions about how the day would run, the first was why some groups had been included and others had not.
At the end of the day, I checked back in with Brian. He was happy with how the meeting had gone; no catalytic breakthrough but plenty of common ground. He seemed tired but energized, body and mind running on contradictory tracks. I gave him a hug near the elevators—too hard, he flinched—and headed back to my life.
This wasn't the first gathering of the ALS clans. It won't be the last. But it was uniquely Brian: professional, organized, community-driven. He believes in the power of connections. It's what helped him build I Am ALS so quickly: Michael Slaby and the White House vets, his business-minded brother, the college buddy on the other end of that first phone call. Tracking the rise of I Am ALS feels a little like watching the end of It's a Wonderful Life, loved ones lining up to pile what they can on the table.
I'm aware that I'm one of them, and that this story is my contribution. I worried, for too long, that this fact also meant there may not be enough actual story there. That I was blinkered by personal investment.
But then, look: There's Brian last April testifying before Congress—a mostly empty chamber but a heartfelt speech in support of more funding for ALS research. There's Brian standing up the first ALS caucus in Congress in June. And there's the 2020 US budget, which doubles the Department of Defense's ALS research funding to $20 million.
And over here: a single tweet from Barack Obama in May 2019 netting some 1.8 million views for an I Am ALS video. The Chan Zuckerberg Initiative announcing $453,000 in I Am ALS funding in September. A segment on the Today show in October. An I Am ALS takeover of Times Square last December, a dozen billboards spotlighting a disease that has spent decades in the shadows. A CNN appearance in February 2020. An op-ed in The Daily Beast written by Brian in May.
I Am ALS did that. Brian and Sandra did that. A community of friends and coworkers and patients and researchers and associations did that. Brian is a type, but he's exceptional. “It's hard because there is no happy ending,” he told me back in March. “We want to believe that we can find a way to make things better. That's a phenomenal part of the human condition.”
Brian doesn't get on planes anymore. In October he fell when he got out of a Lyft in Boston, hitting the back of his head. Thirteen staples later, he and Sandra agreed to curb his travel for a while. Whenever he did leave Chicago, a family member or ALS staffer would accompany him. Then the coronavirus pandemic hit, effectively grounding everyone. It's hard to fundraise during a global crisis. But I Am ALS has not downshifted. “The question that we faced was, do we take our foot off the gas in any way, shape, or form?” Brian said the last time I spoke with him. The answer was no. The timetable for the navigation program remains unchanged. They continue to staff up. And I Am ALS worked with members of Congress to announce two bills the same day in late May, both aimed at removing barriers between patients and potential treatments.
There's another photo I found, this one in our senior yearbook, page 93. It's our fifth-grade class picture. I'm standing in the back, awkward in huge glasses. Brian's sitting in the front row, legs crisscrossed, face serene. I like this one because we're not quite fully formed. The long arc of our lives had not yet been fixed. And then I remember that there is no arc. Nothing's fixed. There's just a box, and what you fill it with.
BRIAN BARRETT (@brbarrett) is WIRED's digital director. This is his first feature for the magazine.
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