For Brian Wallach, the symptoms began with a tremor in his left hand – an unexpected development for a man of only 36. By that age he already was a veteran of the Obama White House, a Georgetown Law graduate and a former track athlete at Yale, where he got his undergraduate degree.
Within a few months, doctors confirmed the cause of that tremor, giving Wallach a devastating diagnosis: ALS, a neurodegenerative disorder without cure. He had just become a father for the second time with his wife Sandra Abrevaya, but his medical team told him he would not live to see another year.
That was 2017, and today Wallach has lived longer and accomplished far more than just about anyone could have predicted. His story, and how he, his wife, and their allies managed to dramatically increase funding for ALS research, is told in the documentary No Ordinary Campaign, directed by Chris Burke and executive produced by Katie Couric. It just screened at SXSW, with Wallach’s old boss, former President Obama, saluting him afterwards at an Obama Foundation event in Austin.
“I just wanted to, in front of all of you, let Brian and Sandra know how incredibly proud I am of them and grateful because I continue to draw strength from you,” said the former president, who is interviewed in the documentary about his former staffers Wallach and Abrevaya. “So often, I think that we think of change as something that comes from on high. And if there was one thing that I was proud of back in ‘07-’08 and if there’s something that I continue to be most proud of now in terms of what our campaign was about, it was the understanding that actually it’s the opposite. Change starts when ordinary people decide they’re doing extraordinary things. I can’t imagine a better set of role models than Brian and Sandra for that proposition.”
According to the CDC, approximately 5,000 Americans are diagnosed with ALS each year.
“The incidence rate is very similar to MS,” Abrevaya told Deadline during an interview at SXSW. “The reason it gets characterized as a ‘rare’ disease, is that it’s based on how many people are alive [with ALS at a given time], because you die so quickly with it. But the chances of getting ALS are actually not rare.”
Abrevaya and Wallach co-founded the nonprofit I Am ALS after his diagnosis and tirelessly lobbied Congress to boost funding for research, even as his health declined.
“They increased ALS funding, federal funding, from $20 million to $100 million dollars… And this is every single year,” Couric noted with admiration. “A hundred million dollars to ALS research, which by the way will be incredibly helpful for Parkinson’s, Alzheimer’s, and a host of neurodegenerative diseases. They also got Social Security disability benefits to be given immediately to ALS patients instead of having them wait five months, which is a lifetime for someone with a disease like this. And, finally, they’re giving patients access to drugs that are in the pipeline that can potentially extend their lives. The work they’ve done is so extraordinary.”
Couric knows about something about rallying support for research into disease. She co-founded Stand Up To Cancer and has spent more than two decades advocating for colon cancer research after losing her first husband, Jay Monahan, to the disease in 1998. Raising the profile of ALS – and consequently the resources devoted to finding treatments and a cure – has become a central focus for Wallach and Abrevaya. The documentary will further that goal.
“With these diseases, like ALS, there are real reasons for hope,” Wallach told Deadline after appearing at a panel discussion at SXSW. ALS has affected his vocal cords, but his wife Sandra makes sure his message is heard clearly. “The problem is that ALS has never been a priority in our society. We’ve seen with HIV and cancer – thanks to Katie – how to turn a disease from fatal to chronic if we prioritize it.”
Burke, the director, has known Wallach since their undergraduate days at Yale.
“I just love the guy,” Burke said. “I learned about his diagnosis in 2018 and, like so many of Sandra and Brian’s friends, raised my hand and said, ‘I want to help and this is what I do,’ meaning filmmaking.” He initially shot a promo for I Am ALS, but soon realized there was much more story to be told. “When it really became a documentary was when I went along with him to his April 2019 testimony to the House of Representatives. Really, I was just embedded — like me and a camera riding in Ubers with him and snaking through the halls of Congress and inside seeing the inner workings of what he and Sandra were starting to do. After that trip it was like, alright, now we’re in it for the long haul.”
Along the way, among those who became supporters of the film is the Chan-Zuckerberg Initiative, founded by Meta CEO Mark Zuckerberg, and his wife, pediatrician Priscilla Chan. Part of CZI is the Rare as One project, a patient-led effort to “improve the lives of people affected by rare disease.”
“Effective communications is about storytelling,” noted Jeff MacGregor, VP of communications for science at CZI. “And storytelling is about finding how to connect with people on an emotional level. And, so, when we met Sandra and Brian and saw what they were doing and saw the incredible work that Chris was doing in bringing this story together, we wanted to jump on board and figure out how can we help support and bring this documentary to life. So, five years later, here we are. Katie came on and has been just incredible at turning this into the documentary it is.”
Couric deflects the praise back onto the protagonists of the film.
“What could be more important than saving lives? I mean, honestly. If you can say you contributed to extending someone’s life, giving them hope, stomping out a disease altogether, I can’t think of a more noble cause,” she said, adding, “I’m just a vessel, but I want them to use me so I can shout it from the mountaintops.”
No Ordinary Campaign premiered in October 2022 at the Chicago Film Festival, in Wallach’s adopted hometown, where it won the Audience Choice Award for Best Documentary.
“I think this movie is about being told there’s nothing you can do and then getting together people to do far more than you ever thought was possible to improve people’s lives,” Wallach said. “I think that is a theme that hopefully resonates with everyone. This movie happens to be about ALS, but it is about hope in the face of long odds.”
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