He was in his mid-30s, a highly successful lawyer and veteran of the Obama White House when his life took a sudden and dramatic turn. He visited a doctor for a persistent cough and mentioned he had also been experiencing muscle tremors and weakness in one hand. Soon he came away with a devastating diagnosis: the neurodegenerative disorder ALS. He was given six months to live.
But he and his wife Sandra refused to accept his fate passively. The story of how they have fought to improve the lives of people with ALS and ramp up funding for research towards a cure is told in the documentary For Love and Life: No Ordinary Campaign.
“Really that’s what it’s about, is building this movement to accelerate progress, to keep people here longer, to improve the quality of life and to unlock these scientific answers that can help people in so many ways,” director said during an appearance at Deadline’s Contenders TV: Doc + Unscripted event.
Burke’s role on the film stemmed from a long relationship with Wallach. They have known each other since they were undergraduates.
“In 2018 I heard from him about this diagnosis. He reached out to a bunch of us from college and let people know,” Burke recalled. “And I think the natural instinct when you hear something like that from an old friend is you want to help. Not being an advanced neurosurgeon or anything, I couldn’t help in the medical way, but I kind of raised my hand and said, ‘Hey, this is what I do’ — this being filmmaking production – ‘and if there’s ever anything I can do to help, let me know.’”
Burke continued, “And a few months later I got a call from him, and he said, ‘Hey, I want to take you up on that. I’m launching a nonprofit, we need a launch spot. Can you come out to Chicago tomorrow and shoot this thing?’ And of course the answer was yes.”
Producer realized the initial idea could be taken much further.
“It started with Chris just shooting a launch spot and then me seeing what he was making and feeling like, boy, there’s a bigger story to tell here and encouraging him to keep capturing as much as they could,” Rummel said. “But then as it kept going and we kept filming more and more, it started to get its own momentum and people just kept jumping on board.”
People like executive producers Katie Couric and Phil Rosenthal, creator of Everybody Loves Raymond. Rummel said supporters joined the film “because of Brian and Sandra and their story. It’s so moving and so inspirational to people that people, when they come across them, decide they want to get involved and come on board.”
Former President Obama appears in the film, as do Meta’s Mark Zuckerberg and his wife Priscilla Chan, who as part of their Chan Zuckerberg Initiative created the Neurodegeneration Challenge Network to seed research into disorders including ALS, Parkinson’s and Alzheimer’s.
“Scientists are discovering more and more links than we ever previously realized between all these diseases,” Burke noted. “And so what you’ve got is the opportunity to galvanize not just the ALS or Parkinson’s community in silos, but to get people together and really see that we’re all sort of rowing in the same direction and we can help one another.”
Wallach, now 43, has long surpassed doctors’ dire predictions for his lifespan. He and his wife continue to lead the nonprofit they founded, I Am ALS.
“Really, it stems from Brian and Sandra’s love for one another,” said Burke, “and to think of the title Love and Life — they do love one another, and they know that every family out there has that love for this person who’s been diagnosed.”