DEFYING THE ODDS

A YOUNG FATHER'S DEVASTATING DIAGNOSIS HAS LED HIM ON A MISSION TO CHANGE THE FUTURE OF A FATAL DISEASE 

- KATE HOGAN

One recent day at Brian Wallach and Sandra Abrevaya's suburban Kenilworth home north of Chicago, their 5-yearold daughter was outside with her mom when she posed a weighty question: "How long do people live with ALS?" Abrevaya didn't hesitate in giving her an honest answer: "Two to five years." The kindergartner walked back into the house to find her dad in his wheelchair. "Dad," she told him, "I'm so proud of you for living more than five years. Keep it up."

Nearly six years after being diagnosed with the disease, Wallach, who worked as a lawyer in President Barack Obama's White House counsel's office, is not just surviving ALS against the odds-he and his wife, who also have a 7-year-old daughter, are on a mission to change the gressive neurodegenerative disease from a death sentence to a manageable condition. "I think our daughters understand how hard we are fighting," says Wallach, 42. "They see it, and they give me the strength to keep fighting."

The couple's relentless activism, chronicled in a new prodocumentary, No Ordinary Campaign, took them to Washington, D.C., where they pushed Congress to pass t the 2021 Accelerating Access to Critical Therapies for ALS Act, which Wallach helped write. The act boosted drug access and development and allocated $500 million in ALS research funding. They also founded the nonprofit I AM ALS (iamals .org) to support families facing the disease. The impact has been "beyond what I could have ever imagined," Wallach says. "I can see and feel how much has changed, and I know we are not that far away from transforming ALS from fatal to chronic. And that's worth fighting for every day."