Documentary: ALS Patient Starts New Awareness Campaign “I AM ALS”


According to a recent article in People Magazine, this Illinois family has a dream: to turn amyotrophic lateral sclerosis (ALS) from a fatal to a chronic illness in Brian’s lifetime.

Brian Wallach had been a lawyer in the Obama White House counsel’s office. Although his spirit is as strong as ever, his health has deteriorated to requiring two live-in caregivers. Yet his wife and two daughters give him the strength to keep moving toward their dream.

Brian and his wife Sandra are on a mission to change the neurodegenerative disease from being a death sentence to a condition that is manageable.

They’ve Only Just Begun

Brian was 37 years old when he was diagnosed with ALS. Brian and his wife traveled to Washington, D.C. where they lobbied Congress to pass the 2021 Accelerating Access to ALS Act that Brian helped write. The Act boosted development and allocated $500 million to ALS Research funding. The couple founded I AM ALS which supports families living with the disease.

Brian and Sandra met in 2008 when they were both working on Barack Obama’s campaign and were married in Turkey in 2013. Sandra is just as dedicated and involved with their mission as Brian.

When they began their ALS advocacy, Brian would walk into a congressman’s office and speak with the Congressional member to present his case. Things have changed recently whereby Brian not only must rely on a wheelchair for transportation between offices, but his speech has also deteriorated to a point where he needs an interpreter for most of his presentation.

Yet when he thinks of the number of friends who have already passed away from ALS, he becomes even more passionate and dedicated. Brian and Sandra feel a deep obligation to keep fighting for them. As of this writing, Brian Wallace is still alive.

An Unremarkable Medical History

Brian was told he may only have six months to live the day he and his wife brought their second child home from the hospital. He had no early warnings. He had been a track star in college with no prior medical issues. Brian explains the drive home that day as an out-of-body experience. He immersed himself in his legal work as a way to avoid confronting the devastating news.

Gradually the couple found they could rely on their background as community organizers.

Although they admit that no one has survived ALS, each morning they wake up with the conviction that they still have a chance. Brian and Sandra hope that their new documentary will be well received.

Brian already sees progress in the nearby future. Through their newly-formed company, Synapticure, they are working to improve access to care for people living with ALS and other neurodegenerative diseases. Brian sees progress in the near future as two new ALS drugs will soon be presented to the FDA for review.

He has a 10-year plan, which means they must see progress every year. He wants to be here for their daughters’ graduations and believes that ALS is no longer hopeless.


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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