Skadden Associate With ALS Stars In 'No Ordinary Campaign,' Documenting His Fight To Cure The Disease
He doesn't know how much time he has left, but he wants to make it matter.
Brian Wallach (courtesy photo)
“This is our closing argument for our lives.”
These are the powerful words that Skadden associate Brian Wallach uttered during congressional testimony as he advocated for ALS patients — himself included. Wallach was given just six months to live when he diagnosed with ALS in 2017, and ever since, he’s been in a race against time to change the world for amyotrophic lateral sclerosis patients. Six years have passed, and through his hard work, not only has Wallach been making meaningful changes, he’s been winning, big time.
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Shortly after his diagnosis, in 2019, Wallach and his wife, Sandra Abrevaya, founded I AM ALS, a patient-led movement leading the fight for a cure to the disease. Their original goal was to raise $100 million of new funding to find a cure within three years, but thanks to Wallach’s lobbying, they’ve far surpassed that. Between 2019 and 2021, he was able to convince Congress to increase government spending on ALS to $80 million annually, and on top of that, people with ALS are now able to immediately access Social Security benefits. Wallach’s dedication to the cause also led to the passage of the Accelerating Access to Critical Therapy for ALS Act (ACT for ALS) — legislation that he helped write — that will afford $100 million annually as part of a five-year action plan for research grants that will speed the development of therapies that can prevent, diagnose, treat, and cure ALS and other neurodegenerative diseases.
Wallach was recently profiled in “No Ordinary Campaign,” an award-winning documentary film that follows him and his wife as they attempt to forge a path to the future for ALS patients. Check out the trailer:
I recently had the pleasure of chatting with Wallach about the film, his work with Skadden, and what he hopes to achieve next. Here is a (lightly edited and condensed) write-up of our lively conversation.
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Staci Zaretsky (SZ): No Ordinary Campaign is such a wonderful, emotional, inspiring film. I’m so happy that you did this and that you were able to share your story and share all of your successes with so many people.
Brian Wallach (BW): It was a big undertaking. If I’m honest, Sandra didn’t want to do it at first because of how much we had to open up our lives to the world. But now we are both really thankful that we did it because so much of what you see cannot be repeated because of my progression and because of the unique situation we found ourselves in with a group of people who were determined to change the world and change the ALS story.
SZ: What an enormous achievement for helping to pass ACT for ALS. How can lawyers keep this progress moving along? What can people do to keep helping?
BW: I was actually one of the people who wrote ACT for ALS, so my background as a lawyer was incredibly helpful for drafting it and for making an argument for it. So number one would be for lawyers to work with nonprofits and with clinics and then with researchers to draft legislation that can help improve the healthcare system piece by piece as much as I want to overhaul it. If we change it piece by piece, before we know it, we’ll have a way better system.
Number two is it would be amazing for lawyers who have a background in trusts and estates and who have a background in Medicaid or Medicare to volunteer to help people with ALS or any other disease who do not know how to navigate the complexity of the system or how to plan their will or their trust so they don’t have to worry about that as they are fighting.
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Number three, I would ask all law firms, big and small, to follow the example set by Skadden and make sure to have at least one pro bono client who is a nonprofit in a disease space. Because what I found is that so many nonprofits call me for legal advice and I have to remind them that I was a federal prosecutor and a criminal defense lawyer, so I can’t necessarily instantly help them with, for example, putting together a 501(c)3.
SZ: You brought me to my next question. How has Skadden supported you through your journey?
BW: There’s too many ways to count. Let me just give you a few. Number one is that they’ve enabled me to maintain my practice and I’ve been able to work on exoneration for a man who was convicted of murder in the 1960s. I also have been able to work on voting rights cases, as well as cases for our corporate clients. So for me, that’s been really important to maintaining a balance between who I was and who I am.
Number two, the firm has been amazing in helping I AM ALS grow from an idea to a full-fledged nonprofit that is redefining how we do patient advocacy.
Number three, the firm is a big family and has wrapped me and my family in love and support every step of the way. For example, I have a call every month with a partner in the Chicago office just to check in, and what he has been doing is inviting other people to join those calls so that I’m able to keep in touch with a lot of folks.
SZ: So how would you say staying active in your professional life has helped you cope with what’s going on with your diagnosis and everything that’s unfolding as this progresses?
BW: I have seen others be consumed by their fight. So for me to be able to step back and do something different gives me the head space and the mental room to deal with the physical changes that I’m living with every day. It gives me a balance that’s really important to my mental health.
SZ: What’s your average day like between doing work and off-the-clock activities?
BW: I still work from nine to six — I have about four or five calls every day and I have to write and respond to emails. At 6:00 p.m., I put away work and hang out with my girls, which is amazing, as well as our one-year-old puppy.
SZ: Do you have any advice for someone else who may be newly diagnosed with ALS?
BW: I will say a few things. Number one, this is the most hopeful era ever for ALS. In the past year, we’ve had three new drugs approved and we have a lot more in the pipeline.
Number two, to make sure to take the space to grapple with your diagnosis. For me, for the first six months, I tried to ignore it and that wasn’t healthy. So what I will say is find another person who has ALS. It may be hard to see them because they’re farther progressed but they will help you deal with your emotions and help you see what’s coming up so that you can prepare for it rather than reacting to it when it happens.
Number three, you’re not alone. It may feel like that, but there’s an amazing community who is waiting for you whenever you’re ready to dive in. Don’t worry, you don’t have to change the world, but if you take action to advocate, it will make you feel like you have some control and some power in a situation that otherwise feels powerless.
SZ: You said, “you don’t have to change the world,” but I really think that you have. I think that you have for a lot of people who have ALS.
BW: One funny story is that what I was going through my diagnosis, we met with a doctor in Boston for half an hour. He and I spoke and he assessed me and at the end of that, he said three things. Number one, “I cannot tell you that you do not have ALS. I think you do.” Number two, he looked at my wife and said, “I’m sorry to inform you that you are stuck with this SOB for a while.” Number three, he looked at me and said, “I have a question. You are a person who speaks for a living. You are a lawyer and you have an amazing network. What if you put that all to use to help rewrite the ALS story?” My mom looked at him and said, “No way,” and I looked at him and said, “I like it.”
SZ: I know you’ve said that it’s time for there to be a first ALS survivor. So with all of the work that you have done, and all of the progress that’s been made, and all of the new medication that that’s been rolled out, do you think that we are approaching that time?
BW: I do. The last medication that was approved by the FDA is one for a genetic cause of ALS. Most of the people with this gene mutation that pass away, pass away within two years. What we are seeing is a handful of patients who are now on the medication, who started on the medication right after their diagnosis, and for some of them they look the exact same as they did when they were diagnosed. So I look at that and I see that we are really close to the first survivors and I plan to be here to be a part of that group.
SZ: I’m happy to hear that, and I’m happy that you have such a bright and positive outlook. Is there anything else that you think the Above the Law audience needs to know about how they can help fight, how they can help you, or how they can get involved with ALS-related causes?
BW: I would say two things. Number one is an easy one, go to iamals.org and put in your email so that you can get updates from us every week.
Number two is the harder one. Most people have no experience with talking to a member of Congress, so it’s intimidating for them, but the good news is that ATL readers have a lot of training and have the ability to make powerful arguments as to why we need to see certain changes. So I would urge them to get involved in whatever disease fight speaks to them and use their power as a lawyer to affect change and cause good trouble.
Wallach is currently looking for a streamer to give this amazing documentary a home. If you’re in a position to help, please do what you can to make sure more people are able to see this incredibly moving and inspirational film.
On behalf of everyone here at Above the Law, we’d like to thank Brian Wallach of Skadden and I AM ALS for taking the time to share more about his journey with ALS, and ways that attorneys can get involved to help beat this disease.
Staci Zaretsky is a senior editor at Above the Law, where she’s worked since 2011. She’d love to hear from you, so please feel free to email her with any tips, questions, comments, or critiques. You can follow her on Twitter or connect with her on LinkedIn.
