Christopher Burke’s SXSW documentary No Ordinary Campaign is one of countless films to be delayed by Covid. But the pandemic hit the documentary especially hard because it is about Brian Wallach, an Obama administration veteran facing ALS — and time is not on an ALS patient’s side.
People with the neurological disease generally live from two to five years after a diagnosis. And Brian Wallach was only given six months to live. He was diagnosed with ALS on the day he and wife, Sandra Abrevaya, came home from the hospital with their second daughter.
The couple had faith in institutions’ ability to help people: They met on former President Obama’s 2008 campaign and worked together in the White House. The young father was only 37, but in an instant, he didn’t know if he would live to see 40. The couple expected a strong safety net to guide them through their fight with the disease — but instead they found a dysfunctional system that did little more than prepare ALS patients for death.
The couple refused to accept the dire situation and used their political know-how to create I AM ALS, an advocacy group to help create a cure for the disease and mobilize and gather patients who were fighting for their lives without support. Wallach and Sandra are actively promoting the film, and he has kept his sense of humor:
No Ordinary Campaign isn’t the first movie about ALS, but they wanted theirs to tell a bigger story.
“It’s a political movie. It’s a story about a campaign. It’s Brian and Sandra’s personal story about this illness,” said producer Tim Rummel. “But it’s also gives something that audiences can take away and apply to their own lives against whatever seemingly insurmountable challenge theymay be facing.”
The filmmakers filmed throughout 2019. When the pandemic hit, it didn’t completely stop production, but it made things harder. The muscles involved with breathing and swallowing are weakened in people with ALS, making them one of the groups at the highest risk for Covid and its complications.
“We lost about six months of being together in person,” said Burke. “But in September of 2020, we decided that because the ticking clock is so vicious with ALS, that we had to get back together anyway.”
The director flew to Chicago, and jumped through every conceivable hoop to be near Wallach without compromising his health. Burke quarantined himself and took multiple different Covid tests before meeting with Wallach. After quarantine, he embedded with Wallach’s family for a week and filmed critical moments that appear in the final film that would have otherwise been lost.
No Ordinary Campaign also highlights the plight people embedded within the ALS community who are facing insurmountable odds, but often go unnoticed: caregivers.
Caregiving for ALS, and countless more illnesses, place a huge financial strain on families. The film focuses not only on Brian’s struggle, but on Sandra’s life as a caregiver, wife, and co-founder of the nonprofit.
Burke knew Brian Wallach from college, but walking into the latter’s family home in January 2019 to film was not guaranteed to create human moments and intimacy with the camera that the story needed. It’s something Burke had to work to achieve.
“You can’t just walk in and have that level of intimacy with a documentary subject just from a prior relationship on paper with their spouse,” said Burke. “I think over the time that we spent together, Sandra gradually grew more comfortable talking about what she was going through with me.”
Sandra became so comfortable with the process that at one point she filmed herself crying on the kitchen floor with her phone. The filmmaker couldn’t be with the family 24/7, so they had a conversation with Sandra about capturing the important moments he couldn’t be there for.
Burke praised her commitment and willingness to be vulnerable for the sake of the documentary.
Ultimately, the filmmakers hope viewers understand ALS through the lens of time, because the disease is fast and aggressive, and the FDA’s drug approval timeline is too slow for many patients.
Brian Wallach Helps Win Passage of the ALS Act
The movie ends on a positive note, with Congress passing the Accelerating Access to Critical Therapies for ALS Act in December 2021. The “warp speed” development of Covid vaccines opened politicians’ eyes to the usefulness of experimental drugs, which many Republicans and Democrats noted in their floor speeches when voting for the ALS Act.
“Covid vaccines showed us what government can do when everybody goes in the same direction to find a common solution,” said Burke. “Now we’re doing that with ALS.”
Main image: Brian Wallach and Sandra Abrevaya with former President Barack Obama, courtesy of The Obama Foundation.