90% of people diagnosed with ALS do not have a family history of it. That, coupled with the fact that 1 in 300 individuals will receive an ALS diagnosis in their lifetime, means the disease can affect anyone, at any age. And yet, widespread advocacy for it is lacking at both the federal and societal level. Brian Wallach and his wife Sandra Abrevaya — who met during former President Obama’s presidential campaign and have spent their respective careers immersed in politics — are changing that.
At 37, Wallach was diagnosed with ALS — the fastest moving neurodegenerative disease. When met with this life-upending situation, the couple’s noble response was to fight. This fight would eventually help launch their organization I AM ALS — which prioritizes a patient-led revolution to be heard, seen and, above all else, find a cure to this fatal disease.
As their journey unfolded, so did a story of sacrifice and determination, of strength and love. The culmination of these elements resulted in No Ordinary Campaign — a film that recounts the last several years of this journey, from their legislative work to the reality of this disease in someone’s everyday life.
The awe-inspiring film premiered in October as a part of the Chicago International Film Festival. Held at the Chicago History Museum, the screening featured commentary from filmmakers — who assured the audience the film “is not a downer” — and a post-film discussion moderated by Katie Couric. What’s more, the film, directed by Christopher Burke, also received the festival’s “Audience Choice Award: Best Documentary,” for which they were tied with the film Art and Pep.
“ALS is relentless. So are we. The question is no longer if we will find cures for ALS, but when.”
In No Ordinary Campaign, it’s mentioned that this work is similar to a political campaign. How did your careers prepare you for this journey?
Brian Wallach: I think there are two things there. First was our experience with community organizing. So for me, the principles that we learned on the ‘08 [Obama] campaign were the foundation to I AM ALS because it gave us the ability to organize and empower the community to use their lived experiences and their voices to dream big and to make those dreams into reality. So that was the foundation for I AM ALS. And number two, were the relationships that we had across [Capitol Hill] and through the campaign.
Sandra Abrevaya: I think we both had this really incredible network of friends and colleagues who had been working in and around government for decades. I also think just a little bit of our own lived experience on what strong advocacy looks like. We’d both been on the Obama ‘08 campaign and in the White House, but even prior to that … we just had this really incredible closeup view to how effective advocacy drives change. And so when we were ultimately in this position — unfortunately with the disease, but fortunately with a bit of the know-how in the network — we were able to move really quickly.
So when we entered the fight, it was really important to us that we weren’t going to spend all this energy and time working on a problem if someone else was already sort of tackling it in an effective way where we could simply add on or contribute. [But] what we saw was a bit worrisome. There was an ALS Advocacy Day and some other activities happening where all the intentions were good but it was less of that sustained relationship building with leadership members in the House and the Senate. And while a photo opportunity is a great moment-in-time tool, it’s not really going to allow you to push an agenda forward with meaningful change. So we were very cautious to only get involved deeply in this way because we saw something that was a missing piece of the puzzle where we felt we could contribute in a way that both rallied and leveraged all the other incredible players in the ALS sector.
As you navigated this fight, what other organizations did you turn to for support or partnership?
SA: The Les Turner Association in Chicago works closely with patients and their families — brings them resources, visits them in their home and provides them with a myriad of support in the Chicagoland area. They ended up becoming the ALS nonprofit that served as our initial fiscal sponsor that allowed us to launch I AM ALS, and have been supportive both to the organization and to Brian and I personally.
Every time we push forward a piece of legislation or are rallying around approval of a drug that has promising results, we do it as a coalition. We understand that the power of collaboration beats all. We band together with as many of the ALS organizations as we can to show Congress or the FDA or the NIH what a united front there is.
BW: What was novel about I AM ALS was there are no other groups doing advocacy like this. So what we did was take our experience with politics and ask, “How do we do the same thing with a disease?” Because what you see is that every disease will come up to the Hill for a day and they will tell the members and the staff really heartbreaking stories, but then they leave and the next group comes in. So what we wanted to do was to have patients who have actual relationships with the staff and the members, that way they can keep in touch with them and not always ask for something. Because if your only interaction is to ask for something, people do get tired of that.
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After years of moving, having finally settled in Chicago, what does it mean to be able to screen your film through the Chicago International Film Festival?
BW: We have been here for 10 years, so for me, this is home. And having the film premiere here where we’ve had so much support from the community and from the whole city, means everything. It is a moment to step back and say, “Here’s what you made possible. Thank you for believing in two crazy people.”
During your research and advocacy, did anything surprise you?
BW: I think for me, and I won’t speak for Sandra, but there were two things. Number one, when I was diagnosed, I expected that there would be a protocol to help me and every other patient find their way in the system. And that did not exist. What we found was a lot of amazing doctors and nurses who were working in ALS, but often they were working in silos. For me, it was really important to help break down the silos and make sure that we had each part of the community working together and talking to each other.
And the second thing was, when you look at the system, patients were too often tokens. So they’d have like one patient on a panel or at a three-day conference or on a task force — and that patient was often not representative of the whole community. And so often that patient did not know as much as the other people at the conference or on the panel or on the task force — so the opinion of the patient was not listened to. We want to change that. Where we have real representation for patients and where we have patients who are educated [on ALS and the system] and are able to go toe-to-toe with other people to help remake the system.
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What do you hope audiences will learn from No Ordinary Campaign, and by extension, how we discuss disability in our society?
SA: I think our hope is that this story inspires people living with all sorts of disabilities and illnesses to believe in their individual power and in their collective power to drive change. And we hope that what we’ve done can serve as some version of a playbook for others. Certainly we made lots of mistakes as we went along the way but we want to share what we learned and what we did and how we did it with people from all walks of life to inspire, to support and to bring other patients forward and help change the healthcare system with a patient-first movement across the country.
BW: And to add to that, what often happens is that we think of patients in the abstract. So one of the main reasons why we agreed to do the film was to help people who are not living with ALS or another disease understand that we are people just like them. We all have burdens and this is ours. And what we hope will happen is that people hear us and realize that they can help move the fight forward and that there is real hope for the first time ever. They can be a part of taking a disease that has been fatal for 150 years and make it chronic. And that we can do that not only with ALS but for many other diseases — if we make it a priority.
What does the road to curing ALS look like? How do we get there?
BW: The good news is for the first time ever there is an amazing pipeline of new treatments for ALS that have the ability to actually slow or stop the disease. That is everything. One important thing [about] ALS, because the causes of it overlap with Parkinson’s, Alzheimer’s and other neurodegenerative diseases, if we are able to slow or stop ALS, it will unlock treatment for other neurodegenerative diseases [as well].
Most people think of ALS and they think it is hopeless. But what we want to do with the film is two things. Number one, we want to help people embrace ALS through our love story because that is the basis upon which we have built our efforts. And number two, we want people to understand that ALS is not hopeless. Instead, we have a community that is achieving victory after victory, that were each supposed to be impossible.
For those looking to learn more about ALS and its related diseases, visit the I AM ALS website, where donations can also be made. For more content on the Chicago International Film Festival, check out our coverage from this year’s festival.
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Margaret Smith is a Chicago-based writer and editor with a passion for socio-political storytelling about their community. They are a graduate of Columbia College Chicago.