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At 37, Brian Wallach was diagnosed with ALS—on the same day he and his wife Sandra brought their youngest daughter home from the hospital. A broken system offered no hope for a cure. So Brian and Sandra have set out to forge their own path.
This is a documentary unfolding in realtime as one couple fights for their own future while seeking to build a brighter one for thousands of others.
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. A story not only about Brian and Sandra, but about all the friends—new and old—who have joined the fight.
Today, there is no cure for ALS. There are no treatments available to save Brian’s life. As Brian puts it, you have two choices in a situation like this: curl up into a ball or act. Brian and Sandra chose to act. In just a short time they have built a patient-led revolution reminiscent of the HIV fight. In doing so, they are not only showing us how to literally create from scratch a movement that makes impossible dreams possible, but also how to really live, even in the face of incredible odds.
Brian and Sandra’s journey opens our eyes to the reality that our healthcare system is broken for those living with rare or terminal diseases. Changing this reality requires upending a medical and research system that discovered ALS over a 150 years ago but has made no real progress towards either a cure or meaningful treatment. The reality of ALS and other neurological or rare diseases is that they can affect any of us. Despite this reality, we have failed to mobilize as a society to defeat them. Brian and Sandra are fighting to remake this broken system and in doing so reclaim their future.
"When you’re told that the world you thought you were going to live in is no longer there, you have to choose to curl up into a ball or act."
ALS (otherwise known as Lou Gehrig’s disease) is always fatal and patients typically live for 2 to 5 years after diagnosis. More than 90% of people with ALS have no family history of the disease. 1 in 300 people will receive an ALS diagnosis in their lifetime. And yet, despite these tragic statistics, there is no cure and the search for meaningful treatments has been frustratingly slow at best.
