At 37, Brian Wallach was diagnosed with ALS—on the same day he and his wife Sandra brought their second daughter home from the hospital. In an instant, everything changed. They went from being a couple only a few years removed from both working at the White House to not knowing if Brian would live to see his 40th birthday.
An otherwise healthy former college athlete, Brian expected to find a system built to help him and Sandra deal with this new reality. Instead, they found a broken and failed system in which doctors told patients to “get their affairs in order and get ready to die,” nonprofits stoked fear among patients in an effort to raise funds for research, and “hope” was a four letter word.
This is the story about what happened next. A story about patients taking control of the fight for their lives, breaking down walls and breaking through to new solutions. Brian and Sandra have moved with astonishing speed to build a patient-led revolution reminiscent of the HIV fight. In doing so, they are not only showing us how to create from scratch a movement that makes impossible dreams possible, but also how to really live—even in the face of incredible odds.