I’m going to prove you wrong’: How a D.C. power couple used an ALS diagnosis to create a political juggernaut
Abrevaya had founded and run nonprofits in the past. She had experienced the toll they took on her as a parent, friend, and wife. And, since her husband’s ALS diagnosis months before, she’d been immersed in a crash course on the disease. She knew that within a few short years, he would require more care than their two daughters, a baby and a 2-year-old.
“We’re obsessive and we work around the clock,” Abrevaya said. “Founding an organization, I knew what it would take out of us. And I thought: How in the world could we, or why would we, do that to ourselves when given one of the world’s worst possible diagnoses? I was absolutely opposed to it.”
But it was Brian Wallach, her husband, whose world had collapsed around him, and who wouldn’t take no for an answer. In college, he ran the 500-meter dash in 68 seconds. Now he can’t walk. Instead, he wears a bright red button on a lanyard around his neck. Press it, and a bell sounds throughout the house. A caregiver will come running. The muscles around his mouth don’t cooperate anymore, either. Most people can’t understand Wallach’s speech unless Abrevaya “translates.” Lately, even she’s having trouble understanding.
Most people would find it a living nightmare. Wallach thinks it’s “epic.”
“You have a disease that’s 160 years old, and everyone has told you: Remember that there’s nothing that can be done,” he said, his wife relaying his muffled words during STAT’s two-day visit to the couple’s home in suburban Chicago. “That it’s too complex, that it will take time to unravel it. Then you look them in the eye, and you say: ‘Thank you. I’m going to prove you wrong.’”
Wallach has not yet willed an ALS cure into existence. But, remarkably, he and Abrevaya have galvanized what is likely the most successful patient advocacy campaign of the 21st century. Since starting from scratch in 2019, the couple has built a movement that culminated, last month, in President Biden signing legislation to fund $600 million of ALS research and patient-focused programs in the next six years.
The couple’s tour-de-force response to Wallach’s diagnosis is a case study in Washington advocacy: How a charismatic power couple leaned on a network that includes top Biden aides; the creators of “Pod Save America”; a Republican congressman; the White House press secretary; an Instagram-famous Peloton instructor; and Barack Obama himself, and used it to steer immense sums of public money toward a long-neglected disease — but one that is diagnosed in just 5,000 Americans each year.
But it is also a story about how one spends their time when doctors say there isn’t much time left at all. About the toll a husband’s idealism can take on his wife. And about how to balance the desire to do good against a diagnosis that doctors view as a death sentence.
“For most people, you’d just want to hide in your house and spend time with your loved ones, whatever time you have left,” Jen Psaki, the White House press secretary and Abrevaya’s boss during the Obama administration, said in an interview. “Every time I think about them, it makes me feel like I’m not doing enough.”