John Driskell Hopkins, or "Hop" to his friends, knows his ALS diagnosis is no laughing matter – but that's not stopping him from maintaining a playful perspective on life.
Hop shared his ALS diagnosis with fans in May 2022. In the year since, he continued touring as a founding member of the Zac Brown Band, recorded more music and started the Hop On a Cure nonprofit dedicated to not only funding research of the disease but also creating a community for people living with ALS.
"I had one lady ask me … she was diagnosed right around the same time," Hop remembered. "She said, ‘How come you’re not crying all day?' I'm like, ‘Crying sucks.’ You know, I've done my share of crying, and I know I don't want to."
He added, "And I'm full of sh--. I'm always making jokes. I'm not going to make light of this, but I am going to poke fun at it and at my expense."
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.
Gehrig played for the team for 17 seasons and retired at the age of 36. He died two years later.
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"I want to remember that I'm a songwriter and a musician, but it's difficult to sit up here and carve away all day when there's so much going on," he said. "But, I'm accepting it. Because I'm doing pretty well, I still feel like one of the new kids on the block. I'm watching other people progress faster around me. I've already lost a new friend who was 36 years old … I don't want to be [with this diagnosis].
"I don't want to be in this business, but because we are, because we're forced into it, I'm honored to at least provide some sort of distraction as an entertainer."
He added, "I still don't know what tomorrow brings. I still don't know where this will lead, and I still wake up every day grateful that I'm able to put my feet on the floor by myself."
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.
Hop is very involved with his nonprofit, and is constantly researching new avenues and different approaches toward treating the disease.
WATCH: John Driskell Hopkins wants to explore more ALS initiatives
"Motor neuron disease is what ALS is. It's also what Parkinson's is," he said. "It's also what Alzheimer's is, and dementia.
"We need to fix our motor neurons, and we need to figure out why they're failing and what we're doing to ourselves and our environment to make them fail."
Hop On a Cure raised $1 million in its first year. The foundation has big plans for the year to come, too.
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"I've been blown away by the support, and I'm blown away that I'm still singing and playing," he said. "I didn't know what to expect last year, and I'm very blessed that I'm sitting here talking to you and able to go on tour."
At the Cincinnati Reds vs the Milwaukee Brewers game on Lou Gehrig's Day, the Zac Brown Band played a post-game benefit concert.
Not only did the game set a Great American Ball Park regular-season attendance record of 44,073 fans in attendance, but also a portion of every ticket sold benefited Hop On a Cure.
The foundation raised more than $200,000 that night – its biggest fundraiser to date.
Hop has a few ideas about what's next for the nonprofit (he wants to hit the $2 million mark in the coming year), but is truly grateful for his friends, family and the band.
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"Coy Bowles and I are our brothers, and we always mess with each other. I told him, he was a couple of doors down at one of the venues. He's a Zac Brown guitar player, and I texted him. I was like, 'I'm coming over to kick your a-- right now. I'll be there in 30 minutes. Don't leave!' You know, like that kind of thing. When I saw him, I think he had to take a knee he was laughing so hard."
WATCH: John Driskell Hopkins is grateful every day
He added, "That's kind of the beauty of being out on the road is that those guys aren't treating me … You know, they're always reaching for my hand when it's time to get up, to go to the next room or, you know, they want to help. But they're not treating me like there's something wrong. They're treating me like they always have, and that's what I need."
Hop remembered when he initially told Zac Brown about his diagnosis.
"After he got over the initial shock, he said, 'Are you making this up because you're a sh---y banjo player?' I was like, ‘You got me!’ If there's anything, that's the most frustrating about it," he recalled.
"It's things like, I took up banjo 10 years ago and was starting to get mobility and speed, and then it stopped and went backwards. I was going to be an old man on a porch, you know, tearing it up. I was trying to be Marc Pruett, and maybe we can figure this out and Marc can help me become him."
Hop added, "I'm trying to keep a lighthearted attitude, but I certainly don't want to play that it's not extremely difficult, especially for people who are dealing with this on a more intensified level."
