Shortly after Brian Wallach was first diagnosed with amyotrophic lateral sclerosis, he flew from Chicago to Massachusetts to get a second opinion.
It was November 2017, and the then-37-year-old assistant U.S. attorney was hoping that a general neurologist may have a different explanation for the muscle twitches in his arm or the difficulty he’d had grasping a pen. He wanted to hear that he wasn’t suffering from ALS, a disease that is perhaps best known by references to Lou Gehrig and the ice bucket challenge.
That’s not what the doctor told him and family members. Wallach was suffering from a disease that is typically fatal within three to five years. But there was more to the visit.
The doctor urged Wallach to use the advocacy skills and the professional network he’d built as a lawyer to do something about a disease that currently has no cure and is estimated to affect 16,000 Americans at any time.
“To say we were shocked hearing that from a doctor is an understatement,” said Wallach, who is now an associate at Skadden, Arps, Slate, Meagher & Flom.
Since that appointment, Wallach and his wife, Sandra Abrevaya, have nurtured that kernel of an idea into a full-blown movement to find a cure for ALS.
The couple, who met as aides on the 2008 Obama campaign, three months ago formally launched a foundation called I Am ALS, which aims to raise $100 million in funding for a cure over three years. They plan to accomplish it by providing something that seems simple: A community of support for patients, their family members and doctors seeking a cure.
Today, I Am ALS has a patient advisory council counting more than 50 members. They are mostly ALS patients whom Wallach has met and who have been inspired by Wallach’s vision to fight the disease.
The hope is that building online communities of ALS patients, families and doctors can lead to real-life change. The groups might help new patients receive medical equipment from other families; encourage neighbors to tell their elected representatives they support more funding for the disease; or connect patients with doctors seeking experimental cures.
“Those kinds of efforts may seem small in the grand scheme of things, but they are the ripple effects that lead to the seismic shift that we need,” Wallach said in an interview in Skadden’s offices in Chicago.
“The idea is to build a community that empowers you to have the tools and the knowledge and basic building blocks to be able to do that. And you can’t do that in isolation. It can’t just be patients. It can’t just be families. It can’t just be doctors,” he said.
The group, with help from other former Obama campaign aides, plans to launch an online platform this summer that blends elements of Facebook, Change.org and a research journal.
Since its late January launch, more than 10,000 people have signed up to become part of the I Am ALS online community, including a number Big Law attorneys who have lost family members to the disease.
Rocked by a Diagnosis
Growing up in Washington, D.C., Wallach was drawn to the law, he said, by its combination of intellectual stimulus, public performance and the belief that the work matters.
Those elements also exist in his efforts to find an ALS cure, and that has helped sustain him as his disease progresses. Today, Wallach’s speech can seem labored and some of his words are slurred. Separate from his ALS diagnosis, he has also developed a cough that is a result of a late-onset allergy to his 15-year-old beagle-hound mix, Hunter.
Wallach couldn’t have predicted this chain of events when moving to Chicago in 2012 to be with Abrevaya. He had worked on Obama’s first campaign and served in the White House as senior vetting counsel. He first took a job as a Skadden associate, and in 2014, left to join the U.S. Attorney’s Office in Chicago.
By April 2017, he was having trouble grasping a pen, leading to the diagnosis.
Between 5 and 10 percent of patients are genetically predisposed to ALS, according to the Mayo Clinic, and men are at a slightly greater risk than women. But the disease can affect anyone and its causes are not well understood.
Wallach struggled with the diagnosis. His life’s narrative seemed to fall apart in a single doctor’s visit, he said. Still, he returned to work the next day. The trial he handled two weeks later proved to be something like an escape from the diagnosis, even if roughly 10 days of performing in court left him physically exhausted.
“I came out on the back end of that trial exhausted but feeling mentally great,” Wallach said. “But I looked at my family who didn’t have that distraction, and for them, they saw me and this new reality. And I had to find a way to meet them there.”
Wallach knew he would not be able to continue work as a government trial lawyer. But he craved to continue practicing law. It served as an intellectual escape from ruminating on his disease, he said, and his goal has been to continue living his life as close to his pre-diagnosis normal as possible.
So he spoke with Michael Scudder, a former Skadden partner who had served as a mentor to Wallach and who is now a judge on the U.S. Court of Appeals for the Seventh Circuit. Wallach told Scudder that he’d like to continue practicing law and also pursue a foundation to raise money for ALS research. Wallach rejoined Skadden in May 2018, and Skadden has since taken on I Am ALS as a pro bono client.
I Am ALS
Wallach may have been surprised by the doctor’s idea to start a movement to support a cure for the disease. But the doctor, who has since retired, was insistent, calling to follow up on the idea.
In addition to spurring Wallach to pursue I Am ALS, the doctor’s attitude has helped shape Wallach’s mental approach to the disease. The diagnosis can lead to a sense of urgency, Wallach said, and a feeling that every moment, suddenly dearer than ever, has to be perfect.
“That is the hardest thing during your first couple months,” Wallach said. “You think, ‘I don’t have much time so I have to do everything under the sun right now.’ And if you do that, you end up missing the stuff you loved from before.”
In a short time, I Am ALS has already made progress on a number of fronts. Wallach has testified before Congress. The group has garnered pledges from presidential hopefuls to fund ALS research and also requested the director of the National Institutes of Health to increase funding for ALS-related research.
I Am ALS has worked to bring together other ALS advocacy groups, including through a coordinated campaign with 19 other groups to thank the more than 160 members of Congress who are supporting a bill to eliminate a five-month waiting period for ALS patients to receive federal disability benefits.
“I have been lucky enough to spend a lot of my time traveling around the country meeting amazing people [with ALS] who help inspire [me] to believe that we are going to find a way to beat this thing,” Wallach said. “And while we’re doing that, we’re going to find a way to live these crazy lives and do things that people thought were impossible. And that in and of itself is really empowering.”
Wallach’s goal is to build a strong D.C. advocacy team to fight for $50 million more in federal funding for ALS research. The other $50 million, which will go directly to research for ALS cures, he aims to raise over three years through the community he’s building through the group’s contacts. In the more immediate timeframe, Wallach’s community-building efforts are providing their own sort of treatment for patients, their families and Wallach himself.
Big Law Connections
Among those involved in Wallach’s efforts are other attorneys who know the ALS disease well.
When Steve Hackney’s father, Charles Hackney, was diagnosed with ALS in 2006, Steve Hackney spent countless hours on internet message boards for patients and family members. The Kirkland & Ellis partner wanted to know what to expect would happen to his father, and he wanted to prepare as best he could.
Hackney’s father’s illness progressed in a relatively rare way, first attacking his ability to breathe, which is typically one of the final stages of the disease. He went on a ventilator while his other muscles were relatively well-kept. But the physical atrophy eventually came, and Hackney’s last communications with his father were through slight movements in his pinky finger. Hackney’s father passed away about three and a half years after his diagnosis.
Shortly after his father passed away, Hackney was still returning to the ALS message boards every day, reading about other families’ experiences. Eventually, he told himself it was OK to stop. Emotionally, he said, he was “wrung out.”
“Unfortunately, I think that happens a lot. ALS comes through like a cyclone. It kills the person with ALS and then everybody moves on,” Hackney said. “And there is no sense of continuity with other people who will get the disease. And it doesn’t have to be that way.”
Hackney was put in touch with Wallach through a mutual friend who had also lost a family member to ALS. Hackney said Wallach’s approach to building a community to support fundraising efforts resonated with him, and he has agreed to support I Am ALS financially.
Over at Mayer Brown, Chicago partner Ryan Liebl has also been in contact with Wallach. Liebl’s brother, Chad Liebl, died in February after a battle with ALS. Ryan Liebl said he was inspired by his brother’s refusal to indulge in self-pity after his diagnosis. He said it seemed Wallach approached the disease in the same way, and he was still considering how he might get involved with I Am ALS.
“I was really motivated by Brian’s take on it, which is to try and build something that’s a game-changer for the disease but to build it in a way that is self-sustaining,” Liebl said. “I really respect people who take a really bad situation and try to make the best of it. He is doing that.”
The Fight Goes On
The mini community Wallach has engaged inside Big Law serves as a kind of microcosm for what he aims to build through I Am ALS on a national scale.
Wallach’s experience connecting with other ALS patients and families has been therapeutic in ways he said he never imagined. During one of his first calls with another patient, fresh off Wallach’s own diagnosis, the patient told him to write down a list of things he was grateful for that resulted from ALS.
The idea seemed crazy at the time, but Wallach wrote the list within the last two months. It included appreciation for his family, friends and “the absurdity of small moments.” It included a trip to the Dominican Republic and the fact that friends from out of town visit him more frequently. Wallach says he is “one of the lucky” ALS patients whose disease seems to be progressing slowly.
“There’s no science behind this, but I think part of the reason why is we have been able to build this effort and come into contact with so many people who inspire us and constantly motivate us,” he said. “And it goes back to that idea of building an online community. It is a working test of our thesis: Could this work in the ALS space? The answer we’ve seen is yes.”