Exclusive: Aaron Lazar Candidly Opens Up About ALS, Says He Wants to ‘End This F—ing Disease’
In a candid conversation with BroadwayWorld, the beloved actor discusses the progression of his ALS diagnosis and says his purpose ‘feels more exciting to me than dying.’
Aaron Lazar was two days into rehearsal for a 2022 regional production of The Bridges of Madison County, in which he costarred opposite Kate Baldwin, when he was diagnosed with amyotrophic lateral sclerosis (ALS). But like any actor, he thought: “The show must go on.”
As Lazar previously explained, his symptoms began in the summer of 2021 when he felt twitches in his leg. Instead of spiraling after doctors confirmed he was living with ALS — a neurological disease his aunt Anita died from when he was in his 20s — he “heard a voice very clearly,” he exclusively tells BroadwayWorld. “It just said, ‘I could beat this, but we got to get rid of fear.’ And I chose hope over fear. That was four-and-a-half years ago.”
Lazar, now 50, lives with slow-moving ALS, a disease of the nervous system that affects cells in the brain and spinal cord. As he explains, the experience is different for everyone: Symptoms progress rapidly for some while they can present slowly for others, and there have been 65 documented cases of reversals, according to ALSReversals.com.
A GoFundMe created June 21 to aid in Lazar’s expensive treatment costs explained that he has now lost the use of his legs, arms and hands, and he requires a BiPAP machine to breathe as well as a full-time caregiver to assist him throughout the day and night.
Still, Lazar has no plans on giving up. “I think it’s true for anybody: If you have a purpose that drives you — and if you have love in your life, and if you have a way to be creative, to express yourself in any way that you can — then you move forward in belief, faith, love and knowing,” he says. “And you stay open to unlimited possibilities. And as long as that feels more exciting to me than dying, that’s what I will do.”
At times, though, things can be tough — both physically and emotionally. Lazar began performing at a young age, and he has racked up numerous Broadway credits, including The Phantom of the Opera, Oklahoma!, The Light in the Piazza and Les Misérables, receiving a Drama Desk nomination for his performance as Enjolras in the 2006 Main Stem revival, among many others.
Living life in a wheelchair is not at all what he expected. “I lived a very physical life as an actor, as somebody who loved playing tennis and going on hikes, working out, being a very physically present dad to my kids with sports,” Lazar explains. “To be in a wheelchair or in a bed all day — I split my time — to be unable to wrap my arms around my kids or my partner [Sarah Wergin]… You lose your physical autonomy. Every single thing that I used to do on my own, from get dressed to brush my teeth or use the bathroom, I need somebody to do it for me or with me.”
At first, he says, “that is a journey of surrender and acceptance because resisting it makes for a lot of suffering.”
The father of two has had to accept a lot throughout the years. It took him a year and a half to tell his children, teenage sons Julian and Adrian (whom he shares with ex-wife LeAnn), that he was living with ALS. “I didn’t tell my kids so that I could do the work that I needed to do A) to heal, and B) to ready myself to share this with them in a way that allows me to continue to live my dream and to continue to give my kids a life where they feel safe and loved and not scared,” he says.
Since Lazar received his diagnosis, the actor has found the positive in just about everything around him. His inspirational 2024 album Impossible Dream, which included a duet with the voice of late actress Rebecca Luker — who died of ALS at age 59 in 2020 — was nominated for a Grammy Award, and he created a podcast of the same name. Lazar strives to get the word out about ALS in hopes to make change and finally find a cure.
“ALS is awful, but it’s been the most extraordinary five years of my life in so many ways,” Lazar admits. “I could never have consciously dreamed up any of that — from an album, to speaking all over the country, becoming an advocate, to the podcast, to the Grammy nomination, to meeting the love of my life in a wheelchair, to starting a company that helps use AI to research ways to understand ALS progression rates. None of this was Aaron Lazar five years ago. And the only way it’s happened is because I truly believe God helps those who help themselves.”
As for what Lazar would like to see when it comes to ALS advocacy moving forward, he firmly says he wants “to end this f—ing disease.” He wants clinical trial testing to speed up, to see artificial intelligence and data science play a major role in discovering new things about the disease and to understand more about the ALS reversals.
He’s been “totally blown away” by the recent outpouring of love from the Broadway community and beyond after the GoFundMe went live. As of publication, the campaign has raised more than $403,000 of its $500,000 goal. “It’s a bit surreal,” he says, noting how there are hundreds of people (“if not more”) he’s never even met who have donated.
“They give me a chance to not just survive, but thrive, as much as I can,” Lazar says.
As Lazar was recently watching the 2026 FIFA World Cup, he heard one of the commentators say that Argentine soccer player Lionel Messi is “writing his own script.” At that moment, Lazar thought, “That’s what we do every day. We write our own scripts, and we rehearse the life that we want to live. We call it ‘rehearse to reverse’ because people don’t realize how powerful they are. Look what we can do.”
“If I could do it,” he adds, “anybody can.”
Photo Credit: Courtesy of Aaron Lazar
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