KENILWORTH, Ill. — When her husband first floated the idea of an advocacy organization for people diagnosed with ALS, Sandra Abrevaya responded in just two words: The first wasn’t suitable for print, and the second was “no.”
Abrevaya had founded and run nonprofits in the past. She had experienced the toll they took on her as a parent, friend, and wife. And, since her husband’s ALS diagnosis months before, she’d been immersed in a crash course on the disease. She knew that within a few short years, he would require more care than their two daughters, a baby and a 2-year-old.
“We’re obsessive and we work around the clock,” Abrevaya said. “Founding an organization, I knew what it would take out of us. And I thought: How in the world could we, or why would we, do that to ourselves when given one of the world’s worst possible diagnoses? I was absolutely opposed to it.”
But it was Brian Wallach, her husband, whose world had collapsed around him, and who wouldn’t take no for an answer. In college, he ran the 500-meter dash in 68 seconds. Now he can’t walk. Instead, he wears a bright red button on a lanyard around his neck. Press it, and a bell sounds throughout the house. A caregiver will come running. The muscles around his mouth don’t cooperate anymore, either. Most people can’t understand Wallach’s speech unless Abrevaya “translates.” Lately, even she’s having trouble understanding.
Most people would find it a living nightmare. Wallach thinks it’s “epic.”
“You have a disease that’s 160 years old, and everyone has told you: Remember that there’s nothing that can be done,” he said, his wife relaying his muffled words during STAT’s two-day visit to the couple’s home in suburban Chicago. “That it’s too complex, that it will take time to unravel it. Then you look them in the eye, and you say: ‘Thank you. I’m going to prove you wrong.’”
Wallach has not yet willed an ALS cure into existence. But, remarkably, he and Abrevaya have galvanized what is likely the most successful patient advocacy campaign of the 21st century. Since starting from scratch in 2019, the couple has built a movement that culminated, last month, in President Biden signing legislation to fund $600 million of ALS research and patient-focused programs in the next six years.
The couple’s tour-de-force response to Wallach’s diagnosis is a case study in Washington advocacy: How a charismatic power couple leaned on a network that includes top Biden aides; the creators of “Pod Save America”; a Republican congressman; the White House press secretary; an Instagram-famous Peloton instructor; and Barack Obama himself, and used it to steer immense sums of public money toward a long-neglected disease — but one that is diagnosed in just 5,000 Americans each year.
But it is also a story about how one spends their time when doctors say there isn’t much time left at all. About the toll a husband’s idealism can take on his wife. And about how to balance the desire to do good against a diagnosis that doctors view as a death sentence.
“For most people, you’d just want to hide in your house and spend time with your loved ones, whatever time you have left,” Jen Psaki, the White House press secretary and Abrevaya’s boss during the Obama administration, said in an interview. “Every time I think about them, it makes me feel like I’m not doing enough.”
Wallach and Abrevaya have built such a sprawling political operation that it’s hard to believe their work only began in 2018.
During an initial push in 2019, they lobbied, successfully, to double the Pentagon’s investment in ALS research from $10 to $20 million. In 2020, their push helped to double the total again, to $40 million. They’ve pressured the Food and Drug Administration to speed up the vetting of ALS drugs; convinced Congress to allow people diagnosed with ALS to immediately become eligible for Social Security disability benefits (eliminating a five-month waiting period); and convinced key lawmakers to pledge that Biden’s proposed moonshot science agency, ARPA-H, will focus specifically on ALS alongside other far more common diseases, like diabetes, cancer, and Alzheimer’s.
The crown jewel of their effort, however, is a bill known as the Accelerating Access to Critical Therapies for ALS Act, or “ACT for ALS” for short. The legislation will fund $100 million worth of ALS initiatives each year, including new federal research grants, a public-private partnership between the government and drug companies aimed at developing ALS cures, and money to help patients access experimental treatments even when they’re not eligible for a clinical trial.
Republicans and Democrats alike rushed to support the legislation: It counted over 380 co-sponsors in the House and over 60 in the Senate, representing well over 80% of elected lawmakers in Washington. The bill had more co-sponsors than any other introduced in 2021, and it wasn’t close.
The lawmakers who introduced the bill don’t hesitate to say it: None of it would have happened without Wallach, Abrevaya, and their advocacy organization, I Am ALS.
“It wouldn’t have passed yesterday without them,” Rep. Mike Quigley (D-Ill.), the legislation’s co-author, said in an interview the day after the bill passed the House by a 423-3 vote. “It wouldn’t be a bill.”
It’s a bit after 11 a.m., which means it’s time for one of Wallach and Abrevaya’s daily rituals: Swallowing roughly half of the 46 pills he takes each day. They have a system. The pills are her job. The glass of a bright-orange electrolyte drink, meant to keep his weight up, is his.
It isn’t quick. There are white pills, tan pills, yellow and red pills. There’s a bit of spluttering. A few lengthy pauses. But all in all, it’s par for the course. This is what ALS does: Biologically, it shreds motor neurons, leading to gradual loss of muscle function. Practically, it robs people of the ability to walk, then to talk, then to swallow, and, eventually, to breathe.
Somehow, though, Wallach finds silver linings, as when he downs pill no. 21, the last of the morning. “I’m just happy I can still do that,” he says, triumphantly.
“It’s a big deal to still be able to swallow pills four and a half years in,” Abrevaya explains. “Well, it’s a big deal to still be alive.”
Alive, yes, but with a life he wouldn’t have recognized five years ago. He’s no longer the confident, broad-shouldered White House lawyer pictured on his mantelpiece standing next to Obama in the Oval Office. Now he’s a man who devotes 20 minutes each day giving every fiber of his being to swallowing pills.
At first, though, he tried to ignore the changes. Immediately after his diagnosis, he poured himself into his work as an assistant U.S. attorney prosecuting a racketeering case against members of a violent gang. But the disease quickly became inescapable. After delivering a nearly three-hour closing argument in court, Wallach nearly collapsed. He left his job as a federal prosecutor soon after.
Some changes have been more gradual: the loss of his ability to climb the stairs, to drive a car, to enunciate words. To walk. And the physical changes have brought unwelcome social ones, too, like uncomfortable first encounters with strangers.
“There are times when I meet new people, and they talk to me really slowly, in single-syllable words. And I want to scream,” Wallach said. “Most people don’t understand ALS. They see me in a wheelchair, and they hear my voice, and they assume there’s some full impairment that also affects my comprehension.”
His wife and daughters, of course, speak to him the same way they always have. But even his family is losing the ability to follow along as he talks.
When Abrevaya, while “translating,” can’t make out a word, she’ll apologize. Wallach’s eyes sometimes register a flicker of disappointment, and he’ll try again until his meaning comes through. He’s begun in recent months to practice using an eye-gaze technology that translates his eye movements into speech. But it’s slow and laborious, and, in his view, worth avoiding as long as his wife can understand him.
Even as his world disintegrates around him, Wallach has remained himself. He is self-effacing: On one call, he commiserates with a patient advocate who, having just walked through Harvard Square, confesses she could never imagine attending such a school. Wallach’s reply: “Me neither.” (He went to Yale.)
He is outgoing: When his daughters’ nanny leaves for the day, Wallach delivers a lengthy goodbye in Spanish. She picks up every word: His voice, she says, is somehow stronger in a second language.
He’s always laughing. When Abrevaya translates for him, he pokes fun at her edits: Ever the spokeswoman, he says, she’ll sometimes pick a different word or phrase even when she hears him correctly. “90% of the time, I’m like, OK,” he says. “I’ll have to choose when to fight.”
He’s always looking for reasons to celebrate, especially the big things: the passage of ACT for ALS, his 41st birthday in October, and his family’s recent Thanksgiving trip to Bermuda. It was their first true vacation since the Covid-19 pandemic began, a destination chosen in large part because of the tiny island’s uber-strict testing protocols.
“There are times when I meet new people, and they talk to me really slowly, in single-syllable words. And I want to scream.”
He celebrates the small things, too: ice cream. An appearance as a “mystery reader” in his 6-year-old’s first-grade classroom, and her first holiday concert two weeks later. Holding his wife’s hand. Holding his younger daughter’s.
Nearly all of it is documented via Twitter. There’s a practical reason for the tweets: Though Wallach’s typing is tortuously slow, it’s now his only means of communicating with others that doesn’t require the help of a “translator.”
But there’s a deeper motivation, too: his kids.
“I hope Twitter is around when they’re older so they can see what I wrote,” he said. “For me, it’s a way to say things that I wish I could write down to them.”
It’s not a luxury he had with his own father, who died of a sudden heart attack at 54.
Wallach, 21 at the time, made two resolutions after his father’s death. The first was to “make everything epic.” The second was to live longer than his dad.
Wallach knows he’s made good on the first. But over the course of two days in his home last month, pondering whether he’ll make good on the second was the only thing that made him cry.
The first name the president invoked, shortly before signing ACT for ALS into law, was that of Lou Gehrig, the baseball star whose name has been synonymous with the disease, known formally as amyotrophic lateral sclerosis, since it took his life in 1941.
The second name Biden mentioned was Brian Wallach’s.
The president devoted the first two minutes of his signing ceremony speech to Wallach and Abrevaya. He began with the story of Wallach, then 36, receiving his diagnosis the day the couple’s younger daughter came home from the hospital. He credited them for willing a kernel of an idea into a $600 million bill.
“Brian and Sandra are joining us today virtually — I say hi to you both — because they turned their pain into purpose,” Biden said. “They were told that it’d be hard, and there’d be too many obstacles … but they never gave up.”
When it comes to recognition, though, the callouts in Biden’s address are just the cherry on top. Four different members of Congress mentioned them by name during speeches the day ACT for ALS passed the House. And since founding I Am ALS, their nonprofit, the couple has enjoyed an impressive array of help: A tweet from President Obama, fundraising help from Jake Tapper, and web-design guidance from the same political operatives who ran Obama’s exalted digital operation in 2008.
Despite the accolades, Abrevaya and Wallach are loath to take credit for the movement’s success. If anything, they credit themselves for providing others with ALS, and their caregivers, with a new space to share their voice. While patients are often reduced to their illness, Wallach said, I Am ALS seeks people out for the skills they’ve built not just as disease advocates, but in their prior careers, too.
Of course, another key reason for their success is that unlike most patient advocates, Wallach and Abrevaya have years of experience as sophisticated political operatives with deep connections in the Democratic Party.
Though the phrase “right place at the right time” makes no sense in the context of an ALS diagnosis, advocates around Wallach and Abrevaya hint at it constantly.
“When I was diagnosed,” Wallach recalled, “people said: We’re so sorry. But we’re grateful you and Sandra are diving in. Because you know D.C., and know how to move things forward.”
After finishing law school, Wallach worked as Obama’s political director in New Hampshire during the 2008 election. He later worked as a lawyer in the White House counsel’s office.
Abrevaya, who graduated law school nearly a decade after Wallach, also worked on the 2008 campaign, where she and Wallach met. She later worked as press secretary to Arne Duncan, the education secretary, and then down the hall from Wallach as an associate White House communications director.
So as they weighed whether to dive into ALS advocacy or fight the disease more privately, they realized they had little choice: No patient advocates could hope for a bigger head start. Nobody else could even dream of accomplishing what they could.
“That’s what ultimately moved me from ‘hell no’ to yes,” Abrevaya said. “How can a couple that has our network, our skill set, and our access not act?”
The group’s wide sphere of influence is apparent throughout its interactions. When Wallach and Abrevaya launched the organization, they hired Danielle Carnival, the neuroscientist who helped lead the Biden-driven “Cancer Moonshot” in 2016 and the nonprofit Biden Cancer Initiative afterward, to work as CEO. (She’s since returned to the White House.)
And during meetings, they refer to Walter Koroshetz, the director of the National Institute of Neurological Disorders and Stroke, the $2 billion scientific agency that funds the lion’s share of ALS research in the U.S., by his first name.
“How can a couple that has our network, our skill set, and our access not act?”
Even the physical limitations of ALS are no match for Wallach’s political savvy, and that of the other advocates he’s partnered with.
During one meeting last month, he and Dan Tate — co-founder of Forbes-Tate Partners, a major D.C. lobbying firm — pushed a pair of Senate aides to move the bill forward. The meeting was scheduled for 30 minutes, but it might have taken just five if not for the pace of their speech: Tate, who sits on the I Am ALS board, is also roughly four years into his ALS diagnosis. His words, too, came in slow, stilted.
They got what they came for. The Senate aides’ feedback was so positive that, just 15 minutes in, Wallach called off the proceedings. He’d been around politics long enough, he said, to know when he should take “yes” for an answer.
“People here in Washington … are motivated to do good, and do better. They’re motivated less by data and statistics and more by human stories,” Psaki said. “The willingness to put your story out there, to testify, to go see members [of Congress], but also to make direct asks — I don’t think you know how to do that unless you’ve worked around this town.”
In addition to Forbes-Tate, I Am ALS has enlisted the help of two lobbying groups: Alpine Group and Winning Strategies, each of which has deployed four individual lobbyists to advocate on the group’s behalf, according to disclosures. I Am ALS reported $2.6 million in total income in 2019 and spending nearly the same amount in 2020, according to federal tax documents.
Some of the couple’s clout, however, has nothing to do with politics and everything to do with pure charisma. There’s Alex Toussaint, a Peloton instructor who, upon learning Wallach’s story, was so captivated that he dedicated a workout to him, in full view of his half-million Instagram followers.
Then there’s the family’s relationship with Quigley, the lawmaker who co-authored ACT for ALS. Though the congressman represents a neighboring district, Abrevaya’s connection comes from Aviva Bowen, an old friend who once served as Quigley’s district director. The friendship began before her freshman year of college, when Abrevaya introduced herself to Bowen’s mother while shopping for college dorm supplies at Bed Bath & Beyond.
For Wallach and Abrevaya, it’s a common thread: They forge connections everywhere they go. In their past lives, it was politics. In their current one, it’s a community of people whose lives have been upended by ALS, hundreds of whom were simply waiting for a chance to act.
“They invited the community into the narrative,” Tate said in an email. “That allowed the community to turn despair into action, and action into hope.”
He continued: “I’ve been in D.C. my entire adult life, and I’ve never seen any movement quite like I Am ALS.”
Taken together, it’s clear that the connections I Am ALS has nurtured and built give the organization a leg up on other advocacy groups. At times, that reality has led to criticism: Namely, that ALS, a disease diagnosed in just 5,000 Americans each year, is getting preferential treatment. While most of the group’s efforts have sailed through Washington with relatively little controversy, some have run into roadblocks, like when Sen. Mike Lee (R-Utah) objected to the proposed elimination of ALS patients’ waiting period for disability insurance, which is the standard for numerous diseases.
“This kind of policy and approach to policymaking poses several problems,” he said in a 2018 speech. “First, it sets the precedent that some diseases or disabilities deserve preferential treatment.” Advocacy for ALS patients was outpacing other diseases, he suggested, thanks to “more political backing.”
Wallach has heard the complaint before. But, like any good lawyer, he has a pre-prepared defense: Not only can ALS research create a trickle-down effect for other neurodegenerative diseases, like Parkinson’s or muscular dystrophy, but his bill can also serve as a template for other disease groups to follow suit with their own parallel efforts.
Abrevaya’s choice of pronouns, when discussing her husband’s disease, is telling.
“When we were diagnosed” is a phrase she commonly uses to begin a sentence. Other refrains include “We’re still alive,” and, once in a while: “When we die.”
Upon first hearing, it’s bizarre. Abrevaya isn’t sick. She certainly isn’t dying. In a macabre way, it’s like the husband who learns his wife is expecting and tells his friends: “We’re pregnant.”
But the more time one spends around Wallach and Abrevaya, the more it makes sense. The more it becomes clear how intertwined their lives are, minute to minute.
Take a journey from Wallach’s bedroom to the living room not 40 feet away. In his motorized wheelchair, he’d make the journey in 10 seconds. But Wallach likes to walk.
Walking, though, requires his wife. Her time, her focus, and her physical strength. So over the course of roughly six minutes, the couple engages in what seems like a prolonged trust-fall as they inch past their kitchen counter and toward the couch. The stakes here are much higher: Wallach has taken a number of spills recently, including a middle-of-the-night fall from bed that left him gushing blood from his forehead.
By now, their bedroom-to-living room routine is practiced. He calls it a “slow-motion waltz.”
Moving from one room of the house to another, of course, might be Abrevaya’s least arduous task as a caregiver.
During a break between two of her husband’s meetings last month, Abrevaya popped her head into his office. She wanted to know if he’d need the bathroom anytime soon. If he did, she’d stick around. If not, she’d take advantage of the lull and step outside for a walk.
Wallach’s disease often means she has to play “bad cop” as a parent, too, like when their younger daughter rushes into their home office and pounces on her father. Abrevaya can’t just sit back and smile — instead, she needs to warn her 4-year-old not to hurt him.
Their fundamentally different dispositions don’t help: Abrevaya freely admits her own inclinations toward anxiety or depression. Anyone who has ever met Wallach, meanwhile, finds him perplexingly upbeat, and not just in the context of his ALS.
His impossibly positive attitude leads Abrevaya to worry he paints too positive a picture on social media: That of ALS as a happy adventure, not an uphill battle that starts difficult and progresses toward impossible.
He’s the one who, when he gets off a plane, tweets his thanks to the airline staff for helping assist with his wheelchair and declares that it’s great to be on the road again. Tasked with transporting her increasingly immobile and medically vulnerable husband amid a deadly pandemic, she sees a different reality.
“What you’re not posting is that I had to get in a fight with 10 people because they weren’t wearing masks,” Abrevaya said. “That you land in Boston to see doctors and I have to get on a bus to get the rental car, and the bus is so packed and people aren’t wearing masks, so I let five buses go by and wait two hours.”
She loves her husband. She loves his positivity. She loves that nearly five years into his diagnosis, he’s still cracking jokes and staging pre-dinner dance parties with their daughters. But she sometimes resents others’ frequent portrayal of caregiving purely as a beautiful act of selflessness and never as a dispiriting slog.
“I think caregiving is awful,” she said. “When I hear people say it’s a privilege, it’s an honor … ”
Her voice trailed off. But she continued: “To watch your husband die, and to have to help him to do the things he used to be able to do on his own, and to live in constant fear that he could fall and hurt himself, all of it is a nightmare,” she said. “I don’t think any of it is a joy.”
Then there are the personal sacrifices: That Abrevaya cut short her career as a nonprofit executive, first as the founding director of Chicago’s Urban Alliance, then as president of Thrive Chicago, a nonprofit geared toward supporting local kids from marginalized backgrounds. That wherever Wallach goes, she must go also. That she used to speak on behalf of the secretary of education, or even the president. Now she speaks on behalf of her husband.
Often, she has found herself using her own voice to amplify Wallach’s delivery of a bleak message. That an ALS diagnosis is almost always terminal. That no FDA-approved treatment exists.
Lately, though, there have been redeeming moments — none bigger than the bill’s passage, capped off by Biden’s personal shoutout. Abrevaya now says there’s no doubt in her mind that she and her husband made the right decision all those years ago.
“He was right, and I was wrong,” she said. “I’m so proud of what we’ve done, and I honestly didn’t think we’d accomplish what we have. And at the same time, there are very real and concrete sacrifices that he and I have both made in terms of being able to enjoy the present.”
It’s allowed her, also, to give her daughters optimistic answers when they ask about Wallach’s disease. Their 6-year-old, in particular, remembers when her father was able-bodied — when he could speak without difficulty, when he could pick her up, or stand behind her as he taught her to swing a golf club. When he didn’t need a wheelchair. When he could come upstairs.
Sometimes she’ll ask to watch videos from years ago, before the disease took over her father’s life, and ask when his ALS will “go away.” She’ll ask whether it’s a disease that kills people. And when her parents say yes, she asks: Always?
Abrevaya doesn’t say yes. She says: So far.