Beating the Odds: The Fight Against ALS

Julia Ioffe onstage with the subjects and filmmakers behind ‘For Love & Life: No Ordinary Campaign.’
Julia Ioffe onstage with the subjects and filmmakers behind ‘For Love & Life: No Ordinary Campaign.’ Photo: United Photography
The Editors
June 4, 2024

Few diagnoses are as devastating for families as ALS. The terminal neurodegenerative disease progresses quickly, tragically stripping away motor and cognitive function. In the words of political comms veteran Sandra Abrevaya, whose husband, former White House lawyer Brian Wallach, was diagnosed with ALS in November 2017, “It’s almost like people become imprisoned when this happens.”

In the aftermath of Brian’s diagnosis, the D.C. veterans embarked on a ferocious and inspiring multifront campaign to raise awareness, funding, and research for the illness. Their ongoing journey was chronicled by director Christopher Burke and producer Tim Rummel in the recent documentary For Love & Life: No Ordinary Campaign

On May 29, following a screening of the film at the French Embassy in D.C., Julia Ioffe interviewed Brian, Sandra, Chris, and Tim about making the documentary, the latest developments in the fight against ALS, the power of Brian’s superhuman optimism, and more. The screening and this article were part of a partnership between Puck and Prime Video; their conversation has been lightly edited and condensed.  

Julia Ioffe: Brian, how are you doing? The film wrapped three years ago, and it seems like you’re really beating the odds. 

Brian Wallach: I am doing great. I have progressed a bit with my ALS, but I am still alive, which is a miracle.

Sandra, since the film wrapped, what has happened in the field of ALS research? I know one of the drugs that you were advocating for in the film showed early promise, then got pulled. What’s the latest now?

Sandra Abrevaya: Well, it has been a roller coaster, and the film depicts that emotional journey. But the good news is—which is one of Brian’s favorite sayings, “The good news is…”—one of the therapies that targets a genetic form of ALS for people who carry an SOD1 gene, people think it could be curative for that subtype of ALS. It’s very, very early days, but goodness, that’s a miracle.

What else? Are there other drugs, trials in the pipeline that you guys are watching?

Sandra: Yeah, Brian and I are obviously completely entrenched in this space. While we know that genetic forms of ALS will likely be the first ones to have fully curative therapies, the approaches that researchers are taking with the genetic versions are giving us really important insights into what they call sporadic ALS. So there is a lot of fast progress.

It’s amazing to think that this really critical early research is, by and large, funded by the government, and that funding has gone from just a couple hundred million dollars annually, and now we’ve increased that by a billion. That’s what it takes to truly change the trajectory of a disease. 

Well, the fact that it happened over the last five years is not at all a coincidence, given your and Brian’s work. Watching you guys talk about getting this completely devastating diagnosis, your response was the most American in the best way possible, right? The can-do spirit. I’m going to kick this disease’s butt, I’m going to change the way it’s treated. You also brought your campaign skills. Like you said, you snapped into staffer mode.

Sandra: These are really Brian’s organizing skills at play that you see in the film and with the community. And Brian just has incredible patience with a lot of different strong opinions. And when we started out, a lot of people didn’t want us in the space. 

Really? Why?

Sandra: Well, they thought that the organizations and the way things were being done was good enough, and that we shouldn’t get in the way. Brian is very diplomatic and he was like, “I totally hear you.” And he would sit there and he would listen and be like, “I’m going to do it anyway, but we’re going to do it together. It’s going to be great. Trust me.”

Brian: I am proud to say that this is giving the ALS community a voice, and the empowerment to actually change things.

I wanted to bring Chris and Tim into the conversation. Chris, you and Brian know each other from college. How did you decide to make the film?

Christopher: It started with an email to a bunch of us college friends. Brian, in 2018, reached out and let a lot of us know that he had this diagnosis. But of course, in the most Brian Wallach thing ever, the email came with a 40-page PowerPoint presentation about how he and his team were going to systematically dismantle this disease. “And oh, by the way, if you can help, let me know.”

So I raised my hand and said, “Hey, I’m not a neuroscientist researcher, but this is what I do. I make films and commercials, so if you ever need help, let me know.” A few months later, I get a call from him that he’s launching a nonprofit, and can I come to Chicago to film a launch spot? We shot it and it turned out great, but since I was there, I decided I better just leave the cameras rolling. The little that I knew about ALS at the time, I did know what it was probably going to do to his voice—and he’s one of the smartest, most eloquent people I’ve ever met in my life, and I wanted to hear everything that he had to say. 

The scene where he’s putting in his contact lenses on the curb, that was that day where I had just gotten off a plane from L.A. And Brian’s there like, “All right, let’s go testify.” That moment was a seminal moment in this campaign. After that, I came back and showed some of the raw footage to my longtime colleague, Tim. And I was like, “Tim, I think there’s something here. Tell me if I’m wrong, but I think we’re in this.” At that point it took very little convincing for Brian, a slight more bit of convincing with Sandra, that, “Hey, we should make this documentary.” 

Tim, how do you produce a film like this? How do you go and say, “Hey, we’re going to make a film about this very grim disease with a 100 percent fatal outcome?”

Tim Rummel: I think this movie has been a real labor of love for everybody involved with it. And we’re now at this amazing point in its journey where it’s been released worldwide on Prime Video. It’s incredible that millions of people can see the film, but it’s been a long road to get there. It started with just Chris, a camera and no money, using his airline miles to get where he needed to go.

Then I came on board, but we still had no money. And then the people at the Chan Zuckerberg Initiative came on board and gave us some support, which let us keep going. And then Katie Couric came on board and did what she could to support the film and amplify it. And Phil Rosenthal, and just an incredible team of people. And then, ultimately, Amazon and Prime Video.

Christopher: All along the way you have people like Katie, who obviously had a connection from losing her husband at a young age to colon cancer, and Phil, who lost his mom to ALS. We were talking before with a bunch of the people here tonight who were saying, “Hey, I have a connection to this disease.” It’s out there. As Nicole says in the film, “It’s not that rare, it’s just we lose people so quickly because of the lack of support and the lack of treatments. But it’s really a huge problem.”

Tim: There’s a moment in the film where they described how I AM ALS came together, where first it’s Brian, and then it’s Brian and Sandra. Well, we just copied that with the film, basically.

Brian and Sandra, what was it like to decide to let cameras in to chronicle some of your most vulnerable, helpless moments—and some of your strongest, most empowered moments? And what is it like to watch it now?

Brian: It’s been amazing to see what Chris created from all the footage. And Tim and Miranda, our editor. I’m so proud to have the movie be available to the world, and hopefully in front of a lot of people. And hopefully inspire a lot of people to believe that they can do the impossible.

Sandra, we talked about this a little bit, but for both of you, knowing how the system worked was key in your activism. Do you have any thoughts about the fact that, in the U.S., in some ways it’s still just about where money flows that determines the diseases that gets cures and treatments?

Sandra: Does that need to change? Yes. And my goodness, I don’t believe there’s anything I’m more grateful for, any decision that I made, that was better than spending the 10 years I did in D.C. and government. I worked in the House, in the Senate, and in the White House for a mayor. What if I hadn’t done that? It gave us all the openings and all the access and all the know-how to do what we did together with this coalition.

Brian and I want other rare disease groups to see that playbook, and to not feel eaten up by a system that prioritizes diseases that affect only broader populations. Because all of us know someone with one of these rare diseases. So, collectively, they’re not rare. And what happens with these diseases is they fall on the shoulders of patients and caregivers, who have to machete their way through the system to advocate while they’re dying. It’s too much. 

Exactly. Brian, what is next in this fight? You unlocked the social security disability benefits for people, you got rid of the waiting period. You got a lot of drugs into patients’ hands that were otherwise blocked by red tape. 

Brian: The next step is having treatments that can halt the progression of all of ALS, and change it from a fatal disease to a chronic one for everyone. I still believe I will be 70 and sitting with Sandra on the front porch sipping lemonade.

Sandra: Yeah, that’s all we want. God willing.

Chris and Tim, I wanted to ask you also about the decision to include not just Brian and Sandra, but other families who were either struggling with the illness or who had lost loved ones to the disease. Tell me about how you found these families, how they’re doing now.

Christopher: I think the community itself snowballed from Brian and Sandra to more and more people. As we were learning more of the story, we asked them for recommendations, like, “Hey, who in this community are some of the people that we should really talk to?” And I’m really glad we did, because there’s so many different ways in. The biggest thing for me is that I wanted people who watch this to identify with it. Of course, I identify with Brian because he’s my old friend. But what if you’re also a military veteran? Maybe you’re going to identify with Juan Reyes more, or a widow who’s lost a spouse like Nicole or Krista. It’s all about community, and we felt it was really important to show the way that was growing, and how everybody has this need to row together in the same direction.

Tim: There’ve been a couple of really powerful films about people with ALS that are very personal, that follow their specific story with the disease. We felt that to do Brian and Sandra’s story correctly, we needed to capture what they were doing, and that’s building a movement. 

What was also so striking to me about the film is the polling you guys commissioned that showed that so many people did the ice bucket challenge but had no idea what it was for. How has ALS awareness changed since you first set out on this journey?

Brian: It has changed a lot.

Sandra: Yeah, when Brian and I first were watching, there was a 60 Minutes piece that aired pretty much the month we were diagnosed. We were so appreciative that 60 Minutes elevated the disease and was bringing awareness to it, but Brian and I could not watch it, it was so depressing. We were like, “If we can’t watch this, nobody’s going to watch this.” You turn them off from engaging and joining your fight, and what was so important was bringing people into this fight, and infusing them with energy and hope and agency and action. 

I forget the name of the lobbyist who worked with you guys, who says the disease makes you turn inward because it’s such a grim diagnosis. But all the words you’re saying—the optimism, the energy to fight, they are perpendicular to what you would expect to feel with this disease. I can’t underscore enough how amazing it is that these are the words and the feelings you continue to bring to this, day in and day out, year in and year out.

Sandra: Brian is very good at activating other peoples’ optimism. I’m actually a pessimist, I married the most optimistic person I had ever met. Every day I lean on Brian and I soak up his optimism, and he does that for everybody. 

Brian: I hope that you all leave this movie and take some action in whatever, wherever you want to see change.

Do we have any questions in the audience? I see a couple hands.

Audience: I work at a polling firm, what can I ask American voters or American adults on your behalf?

Sandra: It is time for us to redo polling, because it’s five years old. Brian has massive infrastructure plans. Brian’s like, burn it down and rebuild. I think that all of these diseases—ALS, Alzheimer’s, Parkinson’s, Huntington’s—affect so many families, and the caregiving burden falls on family members. It’s almost like people become imprisoned when this happens. And I think a key question is, what do families need? What is important to them in leadership to drive forward change? What do people need to survive this train wreck? 

Audience: Is there any data available on how much the latest treatments have extended people’s survivability? There was the one woman in the film whose husband, I think he’s passed, who was in this clinical trial. He showed progress and then the drug was taken away. Is there any more information on that drug?

Sandra: Brian and I fought very, very hard for the drug that Nicole’s husband was receiving, and that he lost access to. It’s called Neuron, and it’s from an Israeli company called Brainstorm. I think one of the biggest challenges with ALS is it is a very heterogeneous disease; it is very difficult to successfully set up a clinical trial. And it is really difficult to assess whether a drug is working or not within the six months that you have with an ALS trial—which is a shorter period, obviously, because the disease moves so fast. Brian and I separately are spending a lot of time trying to figure out how to give biopharma the tools to better design clinical trials. 

While you’re in D.C., are you guys going to pop into any offices on the Hill or in the White House? And what are you asking for? What are you pushing for?

Sandra: On Friday we’re meeting with Senator Durbin and his team, and we’re going to also be meeting with Congresswoman Rosa DeLauro, who you saw in the film as well. She’s been a huge champion for research funding. 

Audience: Brian, cheers to life and to big wins. My question for you is, what is your secret to make this wonderful woman such a fighter on your behalf?

Brian: Every day I say thank you to Sandra, for being an amazing mother, partner, and caregiver. And I make sure to smile a lot.