Interview: ‘No Ordinary Campaign’ at 58th Chicago Intl. Film Fest

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CHICAGO – When Sandra Abrevaya met her future husband Brian Wallach while on the staff of Barack Obama’s 2008 campaign, their future seemed exceedingly bright. But then Brian was was diagnosed with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s Disease), and his prognosis was dim. It was time for the couple to use their knowledge to make change.

Their story is told in the new documentary ”No Ordinary Campaign” (USA), which premiered at and has one more special screening at the 58th Chicago International Film Festival (click title for details).

The films tells that Brian was given just six months to live, which inspired the couple’s expertise to create legislation to help other ALS patients to gain access to new experimental drugs and disability benefits. Brian decided to become a face of the disease, recruiting other patients to become a founder of “I Am ALS.” In the story of Brian and Sandra’s efforts to cut through the red tape of Washington, D.C., the highest level of inspiration, passion and success is the result.

“NoOrd1”
Congress and Beyond: Sandra Abrevaya & Brian Wallach of ‘No Ordinary Campaign’
Photo credit: ChicagoFilmFestival.com

Patrick McDonald of HollywoodChicago talked to the power couple, and besides the special screening of the documentary they will also appear on the 58th CIFF Red Carpet on Friday, October 21st (details below), with Executive Producer Katie Couric, Executive Producer Phil Rosenthal (“Somebody Feed Phil”), Illinois member of Congress Mike Quigley (who sponsored their legislation) and Illinois Senator Dick Durbin.

In an excerpt via Zoom from the interview with Sandra Abrevaya and Brian Wallach, the couple talks about the challenges of their campaign. The rest of the interview is transcribed below …

HollywoodChicago.com: When you decided to give ALS a public face in this campaign, starting with yourself, what was the reaction initially from other ALS sufferers to expose themselves so to speak, when the first and forgivable instinct is to go away before eventually going away because of the terminal nature or the disease?

Brian Wallach: I think that has been the best thing about ‘I am ALS,’ it has created a community where people do not feel ashamed or afraid to share their story. Instead, they see the power in their lived experience and their ability to give voice to what we live through with ALS.

So for me, the whole reason we did this was to make sure that people see that ALS can and does affect anyone, and is part of the solution to many neurodegenerative diseases like Parkinson’s, Alzheimers and beyond.

HollywoodChicago.com: How did the film become part of what you were doing in the campaign, and how did you and director Christopher Burke decide how to tell the story, and keep creating the narrative, without the intrusiveness of constant filming?


Wallach: It began as Chris just tagging along with us and capturing footage that he knew would never be repeated because of my progression. What we ultimately did was try to tell the story that has the personal exposure which allows people to really engage with the film, but to balance that with the campaign itself. I will say also that we had to redo the film three or four times because we kept having amazing victories and we wanted to capture them.

Sandra Abrevaya: Yes, to that point we thought we were done with the film and then last December the ALS Act passed, so we thought that’s the real ending of the film. And then, just three weeks ago this first new drug in five years for ALS treatment – called Amylyx – was approved. So we held off submitting the film to the Chicago International Film Festival because we had to change the ending again.

HollywoodChicago.com: I’ve read Lou Gehrig’s biography, and the honesty about the disease in its last stages for him was counter to the notion of the “luckiest man” narrative … what problematics, in your point of view, was it to name ALS after him, but hide his public face as the disease ravaged him, as it affects everyone afflicted?


Wallach: The benefit of naming the disease after Lou Gehrig is that there is a whole lot of people who know about him, and don’t know the details of ALS. And this is an issue I’ve struggled with myself, because I’m so public, and I don’t want to make everything about the bad days.

Instead, I want to find a balance where I can educate people about ALS and how hard it is. As you can see right now I’m in a wheelchair, and I have to talk through Sandra … and no one ever wants to talk through their spouse. [laughs] But I also want to show there is real reasons for hope for patients living with ALS right now, and that has never been true for the 150 years previously … so we have a chance to help patients avoid the ending that Lou himself went through.

“NoOrd2”
Brian & Sandra at the Premiere of ‘No Ordinary Campaign’ at the 58th CIFF
Photo credit: Brian Wallach/Sandra Abrevaya

HollywoodChicago.com: As human beings in general, we tend sometimes to collapse into our own selfishness, depression and anger … those being natural and human emotions. How does being selfless in this fight and campaign help to change your attitude about moments of selfishness, depression and anger? And what acts or work counter those emotions most effectively?

Abrevaya: Brian and I met while doing public service, it’s clearly something that even before we were diagnosed it fueled us, it made us feel good. So when we were diagnosed, we knew that we could … through a version of public service … change the course of this disease with our community and our network, we knew that would make us feel good. That’s the path we took for lots of reasons, but mostly because we saw possibility and that opening that we knew would fuel us.

Wallach: Adding to that, as we’ve been on this campaign I think we’ve become more open to and aware of the bad emotions and the good ones. So for me, I will say that each day I have a bad moment when I become depressed or when I feel selfish, but I will balance those out with an appreciation for all the amazing things that I’m lucky to have around me, and with a community that helps inspire each of us to dream bigger, and to do the impossible.

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