Russell Andrews Advocates for ALS Research and Reauthorization of ACT for ALS
The "Better Call Saul" actor, diagnosed with ALS, speaks out about his symptoms and his new mission to support those affected by the disease.
Actor Russell Andrews, known for his roles in "Better Call Saul" and "Grey's Anatomy," has publicly shared his experience with amyotrophic lateral sclerosis (ALS) and is now actively advocating for increased research and support for the disease. Andrews, 64, announced his diagnosis in May, coinciding with ALS Awareness Month, and has since dedicated himself to becoming a voice for the ALS community.
Andrews' symptoms began several years ago, initially presenting as dropping objects and numbness in his fingers. He also experienced nerve-related sensations in his arm and shoulders. He initially suspected a stroke, but after a process of elimination and further testing at Cedars-Sinai Hospital, he received an ALS diagnosis. The progressive neurodegenerative disorder, for which there is no cure, impacts nerve cells in the brain and spinal cord, leading to progressive muscle control loss.
He recounted the difficult moment of receiving the diagnosis, noting that his neurologist could not provide a definitive prognosis. "I did ask immediately, 'So what am I looking at? Is it five months? Is it five years?'... My neurologist, Dr. Badii, who's wonderful, of course, she said, 'Well, we don't know.' And at that point, that's when everything was loud and quiet all at the same time," Andrews told The Daily Mail. He added that he would have preferred a definitive answer over uncertainty.
Andrews' diagnosis came months after the death of actor Eric Dane, who passed away from ALS at age 53. Andrews mentioned Dane, stating, "The gentleman before me had a massive career, Eric Dane." He sees his current role as bringing visibility to the disease and its impact.
He is working with organizations like the ALS Network and EverythingALS, a non-profit focused on using technological innovations and data science to aid ALS patients. "It has turned out to be a wonderful thing because I've seen just in the year or so that I've been part of the advocacy part of it, I've seen the highs of the highs and the lows of the lows, but there has been beauty and joy in all of it," he said of his advocacy work.
In his advocacy efforts, Andrews has traveled to Washington, D.C., to meet with lawmakers and call for the reauthorization of the ACT for ALS. He emphasized that ALS affects individuals across the political spectrum and that bipartisan support is crucial for progress.
Andrews plans to be actively involved in advocacy for the next two decades, expressing hope for a future cure. "I have a 20-year plan," he explained. "I plan to be here on the day when someone walks in with that bottle and says, 'We have it. We figured it out,' and it will be a collective of all of us."
He also spoke about the personal impact of his diagnosis, particularly on his children, with whom he shared the news in person. His fiancée, actress Erica Tazel, has also provided significant support.
Amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, is a fatal condition that progressively worsens. Symptoms can include muscle twitching, limb weakness, and difficulties with swallowing and speaking. While genetics play a role in some cases, the cause of ALS remains unknown for most individuals. The disease typically affects people between the ages of 60 and 85, with men being diagnosed at a higher rate before age 65.