John Driskell Hopkins talks about living with ALS and finding 'solutions' for disease through his nonprofit

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John Driskell Hopkins is perfectly in tune. 

The 51-year-old multi-instrumental musician, who goes by the name "Hop," has played in front of millions of fans across the world as a founding member of the Grammy award-winning group Zac Brown Band. 

He’s a songwriter, and co-wrote the band’s first No. 1 hit on the Billboard Chart, "Heavy Is the Head," featuring vocals from the late Soundgarden singer Chris Cornell. The song made Zac Brown Band only the second musical act after Bon Jovi to have a No. 1 single on both mainstream rock and country charts at the same time as "Homegrown" soared to the top on the Jekyll + Hyde album shortly after its release in 2015.

He’s a devoted father, husband, brother, actor, theater geek, the ultimate Tenacious D fan and has honed his craft as a musician for decades. He formed his first band, Brighter Shade, with Andy Birdsall in 1996.

After decades in the business perfecting his craft, Hop knew there was an issue with his body. Last month, he shared with his fans that he was diagnosed with ALS.

The 51-year-old multi-instrumental musician, who goes by the name "Hop" has played in front of millions of fans across the world as a founding member of the Grammy award-winning group Zac Brown Band.  (Jolie Loren Photography )

ZAC BROWN HAD TO LAYOFF ‘90 PERCENT’ OF TOURING CREW DUE TO CORONAVIRUS PANDEMIC

"I started noticing some issues with my stability and my speed on my instruments and just general mobility as early as the fall of 2019," Hop told Fox News Digital during an interview ahead of Global ALS Awareness Day, which is on June 21. 

Hop had been taking cholesterol lowering, prescription statin medication for "plaque" in his arteries, with side effects that can often include weakness and muscle pain.

His doctors agreed to go off the medication for a few months, and Hop noticed his symptoms weren’t improving.

"It was kind of hard to localize what it was that was bothering me, but I kept telling people, ‘There's something wrong with me.’"

— John Driskell Hopkins

But Hop would have to wait to get more help as the coronavirus began spreading throughout the United States in early 2020. By March, the World Health Organization declared COVID-19 a pandemic, and former President Donald Trump followed with a national emergency as states began issuing stay-at-home orders, virtually shutting down all non-essential businesses, which included medical care.

"No one did anything for 18 months," he recalled of the shutdown. When people would ask why he didn’t feel good or what was going on, it was difficult to pinpoint a specific issue. 

"It was kind of hard to localize what it was that was bothering me, but I kept telling people, ‘There's something wrong with me.’" 

He further described the onset of his symptoms: "If I got angry or if I got, like, emotionally happy or showed some sort of, like, any sort of emotional response, and then I would walk across the room – My knees would kind of lock up. The only thing I could liken it to is cerebral palsy where if one gets emotional, one doesn't have as much control over their muscles." 

Hop was diagnosed with ALS in December 2021.

Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is named after the former New York Yankee great who was forced to retire in 1939 due to the debilitating disease and after playing for the team 17 seasons. Gehrig retired at the age of 36 and died two years later. 

JOHN DRISKELL HOPKINS OF ZAC BROWN BAND ANNOUNCES ALS DIAGNOSIS

John Driskell Hopkins performs onstage for Georgia On My Mind at Ryman Auditorium on May 10, 2022 in Nashville, Tennessee. Hop formed his first band, Brighter Shade, with Andy Birdsall in 1996. (Danielle Del Valle)

ALS is a progressive neurological disease which targets the nervous system and motor neurons in the brain and spinal cord, weakening muscles and limiting physical function.

The cause is unknown and symptoms can vary, but muscle weakness that worsens over time is common in many cases. 

There is currently no cure for the disease and progression of symptoms varies from each case.

"When you hear something like that, the world gets really small and the anxiety was pretty rough," Hop said of his initial diagnosis. 

"I'm in a different place now, but I also believe that my progression is very slow, and I'm hoping that it continues to be very slow and that I'm able to perform for many years as we continue to find new solutions."

Hop publicly shared his diagnosis in May 2022 and has since been building the Hop On a Cure nonprofit foundation dedicated to not only funding more research of the disease, but also providing awareness and creating a community to support people living with ALS.

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"The truth is that there are still a lot of questions about it, and it could be any number of different diseases that lead to this symptom," he said describing his own stability issues. "Why do football players seem to get it? Why? Maybe it's head trauma. You know, why do young people get it? Maybe it's environment. Maybe it's their internal biome. I've been known to have about a beer and pizza in my day and my doctors have assured me that that's not it. 

"We don't know what it is. So it leads us to the question, ‘Well, if we don't know what's causing it, how do we know how to fix it?’ It’s a multifaceted problem."

Sporadic ALS, meaning without any known family history or associated genetic or environmental risk factors, represents 90 percent or more of all ALS cases, according to the National Institute of Neurological Disorders.

The Zac Brown Band performed at the 49th CMA Fest in Nashville earlier this month. Band members include, from L-R: Coy Bowles, John Driskell, Matt Mangano, Caroline Jones, Zac Brown, Daniel de los Reyes, Chris Fryer, Jimmy De Martini and Clay Cook. (John Shearer)

He formed Hop On a Cure almost "immediately" and has actively worked on finding the research that will "have the highest impact for stopping and reversing the symptoms of illness."

"We mean business, and we are trying to take this thing down metaphorically and literally," he said. "We're just getting out there and trying to inspire, but we're also trying to be the people that make a difference. There are a lot of fighters out there."

"God willing, I plan to be rocking with these amazing people for many years to come."

— John Driskell Hopkins

Hop had a few good friends lend a supportive hand when he announced his diagnosis last month, and was joined by the band, including Zac Brown, Jimmy De Martini, Coy Bowles, Chris Fryar, Clay Cook, Daniel de los Reyes, Caroline Jones and bass player Matt Mangano. A soundtrack of "Good Morning, Believers!" by Hop, featuring Emily Saliers from the "Lonesome High" album, played in the background as they discussed the #HopOnACure foundation.

"Because my symptoms have been slow progressing form the start, we believe they will continue to be slow progressing going forward," Hop said in the video. "God willing, I plan to be rocking with these amazing people for many years to come."

Brown added, "The technology and research around ALS treatments has been advancing, but we still don't have a cure. Thanks so much for your prayers and helping us cure ALS."

The award-winning band has released seven studio albums, two live albums and one greatest hits album with massive commercial success from their hit song "Chicken Fried." Their first album, "The Foundation," is certified triple platinum by the Recording Industry Association of America, and its follow-up catalogs — "You Get What You Give" and "Uncaged" — both went platinum.

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