The last time you heard about ALS — a/k/a Lou Gehrig’s Disease — was probably a decade ago when the Ice Bucket Challenge became a viral sensation which raised over $100 million dollars for ALS research. As all memes do, it quickly faded from attention, but the number of people being diagnosed with the disease did not.
“For Love and Life: No Ordinary Campaign” is a documentary about Brian Wallach, who — on the same day in 2017 he and wife Sandra Abrevaya took their second daughter home from the hospital — was told by a neurologist that he had ALS. That doctor, and every other one they went to, told Brian he had six months to live, because there was no cure for this terminal disease.
With Sandra’s support, Brian became an activist to try to get Congress to spend more money on research into the disease and to speed up access to disability benefits, which some ALS sufferers had been forced to wait five months to receive. When you’re only going to live six more months, that’s forever.
The couple met on Barack Obama’s first presidential campaign in 2007, and had a network of political connections to turn to, which gave them an advantage in their advocacy. The film follows them as Wallach testifies before Congress in 2019 and tracks the growth of their non-profit organization, called I Am ALS. As Brian and Sandra point out in the doc, research into a cure for ALS could also benefit people with related diseases like Parkinson’s and Alzheimer’s.
One aspect of the movie that really hit home with me was its emphasis on the importance of caregivers. Sandra did an extraordinary job at home, as they traveled for meetings with politicians and others, and at Brian’s side for his appearances in congressional hearings, often speaking for him when he no longer had the physical ability to do so.
It reminded me of the dedication my mother had for my father as he wasted away, suffering for years from a neurodegenerative disease in which his body slowly stopped functioning even though his brilliant brain remained intact. No one can get through such a slog of doctors, therapists, and our broken medical bureaucracy without the compassionate care and assistance of family members and personal advocates.
“For Love and Life” was made by Chris Burke, a friend of Wallach’s from Yale, with financial support from Katie Couric and Priscilla Chan, wife of Facebook founder Mark Zuckerberg. In addition to Brian and Sandra, it features other ALS sufferers and their spouses, as well as doctors and researchers working on discovering anything that will help them.
It’s an uplifting story that I recommend with an 8.5 out of 10.
“For Love and Life: No Ordinary Campaign” played at some film festivals and won the Audience Choice award at the 2022 Chicago Film Festival, but was never given a wide release. It’s now streaming on Amazon Prime Video.