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‘Every day is precious.’ Zac Brown Band’s John Driskell Hopkins reflects on ALS diagnosis
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Musician John Hopkins and wife Jennifer visit Gainesville Wednesday, Nov. 23, 2022, for lunch at brother Mark's Gainesville restaurant Hop's Kitchen. - photo by Scott Rogers

A year after receiving a grim diagnosis, John Driskell Hopkins — otherwise known as “Hop” — is still singing, cherishing each grain of sand in his hourglass. 

In 2019, the Gainesville High graduate, vocalist, guitarist and founding member of the Zac Brown Band began noticing stiffness in his hands, slurring in his speech and balance issues. Hopkins, now 51, chalked it up to age.

“At some point you just think, ‘I can’t jump on stage forever,’” he said.

However, visits to five different neurologists revealed a different culprit: amyotrophic lateral sclerosis, or ALS.

His diagnosis came in December 2021, just before Christmas.

ALS is a progressive neurodegenerative disease affecting motor neurons — nerve cells extending from the brain to the spinal cord and to muscles throughout the body — that control voluntary muscle movement, according to the National Institute of Neurological Disorders and Stroke. 

The deterioration of motor neurons frays the connection between the neurons and the muscles with which they communicate and, gradually, the brain, halting the organ's ability to initiate and control voluntary movements including eating, speaking, overall mobility and even breathing, the institute said.

While a small handful of FDA-approved medications are on the market currently, a cure for ALS remains to be discovered, and those diagnosed with the disease are given a three- to five-year prognosis. For about 10% of those diagnosed, that window extends to 10 years or more.

“After I learned about the diagnosis in December, we started planning spring break in April and I thought, ‘What if I can’t walk to the beach?’” Hopkins said. “We didn’t know what to expect. We’re blessed that we have this year to chalk up to, ‘We had an emotional, stressful year, but it was a normal year in so many ways.’” 

The past year, according to Hopkins’ wife, Jennifer, has been marked by ups and downs, with the first few months post-diagnosis among the steepest inclines.

“We’ve gone through phases,” she said. “It was really difficult those first few months — just understanding what it meant or what it could possibly mean, educating ourselves and trying to find appropriate care, trying to prepare as a family.”

“It was definitely an adjustment period for several months,” John echoed. “We were trying to figure out what our next moves were going to be, because the rabbit hole is deep and you really feel like you’re going to be in a wheelchair before you know it. Luckily, I’m still not in one. Every day is precious.”

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Musician John Hopkins and wife Jennifer visit Gainesville Wednesday, Nov. 23, 2022, for lunch at brother Mark's Gainesville restaurant Hop's Kitchen. - photo by Scott Rogers
‘Time is of the essence’

Hopkins’ symptoms have progressed slowly, he said, with little sign of change.

“If this is any indication of what we’re to expect, we’re going to be OK for a while,” he said. “Hopefully that gives us more time to figure out what could have gone wrong or triggered this and get on top of it. We’re working diligently to discover new treatments and we’re on every one that’s available now. If it’s not going to hurt me, I’m taking it.” 

A father to three daughters — Grace, 14, and twins Faith and Hope, 10 — John is voice banking with Boston Children’s Hospital in the event that he becomes unable to speak on his own. 

While his voice is still on his side, he’s leaving nothing unsaid, or unsung. 

Bearing titles like “I Love You Forever,” “Each Other” and “Dream Bigger,” he’s spending his time in the studio penning messages he wants to leave behind.

“It’s kind of dismal to think about, but it’s where my brain is right now: What would I say to Jen and the girls if I couldn’t say it? What have I not said that might need to be said? It might be courage or confidence or something that I can sort of give to my children and my wife if I’m not able to say ‘I love you’ every day. It’s a hard thing to get used to.”

He’s also working to eradicate the disease once and for all through his foundation, Hop On A Cure, which has already raised upwards of $100,000 and is poised to grant funds to research facilities making strides toward finding a cure.

About $14,000 of that sum, the Hopkinses noted, has been raised by patrons of Hop’s Kitchen in Gainesville, owned and operated by John’s brother, Mark.

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Musician John Hopkins, right, wife Jennifer and brother Mark take a photo Wednesday, Nov. 23, 2022, at Mark's Gainesville restaurant Hop's Kitchen. - photo by Scott Rogers

“I’m a guitar player, not a scientist. But we are hopeful that we will make ALS livable, certainly within her lifetime,” John said, pointing to his wife. “With a three- to five-year window of survival, you don’t get many new kids on the block. It’s not something that there’s a lot of old-timers talking about 'back when they got it.' They’re gone. We felt like time was of the essence and we needed to jump in there and do what we can to help — not only for my sake, but everyone who is plagued with this. We are going to keep fighting and enjoy every day.”

At present, Hop On A Cure is run by John, Jennifer and John’s manager, though the trio are working to assemble a board of directors and staff who can take the reins by the new year. 

“We think Hop On A Cure is going to be an incredibly efficient, well-run place to contribute funds that you know are going to go toward finding viable solutions to motor neuron disease,” John said. “I’d like to find (a cure) tomorrow if that’s OK. It’s emotionally dangerous to expect that we would find something in my lifetime, but we’re hopeful.”

Projections by the ALS Association suggest the disease could be livable by 2030 with continued strides toward improved treatment and control.

“So it’s not hopeless,” John said. “We want this to be a disease that is reversible and preventable with early detection and fully eradicated.”

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Musician John Hopkins and wife Jennifer meet up with family members Wednesday, Nov. 23, 2022, at brother Mark Hopkins' Gainesville restaurant Hop's Kitchen. From the left are Judy Janowski, Joan Hopkins, John Hopkins, Ralph Hopkins and Jennifer Hopkins. - photo by Scott Rogers

In the interim, the couple are planning for the possibility of a bathroom renovation and elevator up to John’s studio in the attic should his symptoms progress to the point at which he requires a wheelchair, though at present the odds seem favorable, as John recently drove the family from their residence in Marietta to spend Thanksgiving in his childhood home in Gainesville.

He also recently wrapped up another tour with the Zac Brown Band and finished recording a Christmas album slated to release next year. Now, he’s preparing for a series of Christmas gigs at Sandy Springs Performing Arts Center Dec. 15, the Grand Ole Opry Dec. 16 and the Mulehouse in Columbia, Tennessee, Dec. 17.

“As long as I’m singing it, I’m bringing it,” he said. “Right now we’re still focusing on our time. We realize more than ever that there’s only so much time in a day and only so much time that we get on this rock. We’re embracing every day.”

To learn more about Hop On A Cure and donate to the cause, visit hoponacure.org