John Driskell Hopkins

Members of Zac Brown Band Songs – Search Chris Fryar, John Hopkins, Coy Bowles, Zac Brown, Clay Cook and Jimmy De Martini pose for a photo shoot at The Melrose in Nashville in Feb. 16, 2009. ©Samuel M. Simpkins / The Tennessean

After ALS diagnosis, Zac Brown Band member pens honest ballad for his daughters  

Story by Melissa Ruggieri, USA TODAY

In the three and a half years since John Driskell Hopkins was diagnosed with ALS, his voice has slowed a beat and he struggles with balance, often using a walking stick to navigate airports and snaking backstage hallways.

But, he says with an optimistic lilt, “compared to a lot of people, I’m doing great.”

He wiggles his fingers on a video call from a dressing room in Cincinnati, where the Zac Brown Band will play that night, to show “they still work.”

Hopkins, 54, has long circled among guitar, bass, banjo and ukulele in the group, which has adapted to any changes he’s needed to make to keep his vocal or guitar parts. “I’m hoping to be out there as long as I can. Sometimes I feel like (performing) gives me more inspiration to keep going,” he says.

Though Hopkins’ form of amyotrophic lateral sclerosis – also known as Lou Gehrig’s disease – is progressing slowly as it attacks his upper motor neurons that primarily affect the brain, he is accepting of a diagnosis with a lifespan that doesn’t often extend past five years. “Something could happen tomorrow and I could be paralyzed,” he says.

“But typically, if you get to five years after diagnosis, they may say this is presenting more like PLS (primary lateral sclerosis). But it’s a non-starter in the conversation because nothing has changed. It just means a lower progression rate, which I can be grateful for.” 

John Driskell Hopkins pens song for his daughters

The day of Hopkins’ diagnosis in December 2021 was devastating. He and Jennifer, his wife of 17 years, had plans to take their daughters Sarah Grace and twins Lily Faith and Margaret Hope, now 16 and 13, to Callaway Gardens in their Atlanta hometown to see the annual holiday lights display.

After agonizing over the decision, the couple decided to “make the best of it” with their girls. But that night, Hopkins couldn’t sleep, haunted by the cruel reality of his diagnosis.

“I kept wondering what I could possibly say to my kids about this. You want to try to come up with this fatherly advice,” he says. “They’re kids. They haven’t been to college or gotten married. All of these things you expect a parent to help with and be there for, it was looking like I might not be there for it.”

The one thought Hopkins couldn’t shake was, “I love you forever,” which he’s turned into a song with the same title after working on it for months after his diagnosis with Zac Brown Band comrade Clay Cook.

“It’s tricky to think of things that haven’t happened yet and try to get ahead of them because you’re told your experience is going to be cut short,” he says.

John Driskell Hopkins (right) worked with fellow Zac Brown Band member and friend Clay Cook to write “I Love You Forever,” which Driskell, who suffers from ALS, dedicates to his family.© Tyler Lord for John Driskell Hopkins

The poignant piano ballad, which Hopkins released in May for ALS Awareness Month, is a valentine to his loved ones as he speak-sings lyrics such as “I don’t know how long this body will hold me/but my hope for you is you will grow old/we will be together in the ever after.”

The closing verse is especially heart-rending, as Hopkins uses his storyteller approach to quietly offer, “You girls and your mother/you have one another to hold and lean on/always know that.”

Life is slower, but ‘business as usual’

Hopkins is trying to stay busy both with music – the Zac Brown Band has a few dates through June and he continues to work on his own music, including another Christmas album – and helping others with ALS.

Three years ago, he and Jennifer started the Hop on a Cure foundation to support research to prevent and seek a cure for ALS, while also raising awareness about the disease.

Hopkins moves his hands to show the regularities of his life these days – “music, family, foundation. Music, family foundation” – and says he is as involved as possible with the daily undertakings of the organization.

“In the three years we’ve been a foundation, we’ve granted over $4 million in research projects. That’s no small feat but nowhere close enough to what we need,” he says. “We have to fund as many research projects as possible because we don’t know which one is going to hit. We’re learning a lot, but there is still no cure or treatment that will stop it.”

John Driskell Hopkins – Search Videos has been able to stay on the road with the Zac Brown Band even with his ALS symptoms affecting some of his motor skills.  © Emily Butler for John Driskell Hopkins

Despite the grim truths of his condition, Hopkins is approaching life as “slower, but business as usual.”

He took his daughters and “a busload of girls” to Olivia Rodrigo and Billie Eilish concerts last year in Atlanta and met up with his bandmates to catch Tool and Pearl Jam.

Normalcy is a challenge, but it’s become almost a self mandate.

“I do need to get more rest,” Hopkins admits. “But I don’t want to miss out on anything.”

This article originally appeared on USA TODAY: After ALS diagnosis, Zac Brown Band member pens honest ballad for his daughters

Has anyone ever reverse ALS – Search Videos

Yes, there have been rare cases where individuals diagnosed with ALS have experienced significant recovery, sometimes referred to as “ALS reversals”. While ALS is generally considered a progressive and irreversible disease, some patients have regained lost motor functions, defying typical expectations2. Researchers are studying these cases to understand potential factors that might contribute to such reversals, including genetic variations and experimental treatments.

Would you like to explore more about these cases or the latest research on ALS treatments? 1www.als.org  2healingals.org  3neurosciencenews.com

What factors contributed to these rare ALS reversals?

Researchers have identified a genetic mutation in the IGFBP7 gene as a potential factor in rare cases of ALS reversal2. This mutation appears to reduce the production of the IGFBP7 protein, which is linked to the insulin-like growth factor-1 (IGF-1) pathway—a pathway long studied for its potential neuroprotective effects2. Some individuals with this mutation have experienced partial or full recovery from ALS symptoms, defying the typical progression of the disease.

Scientists are now exploring whether targeting IGFBP7 could lead to new therapeutic approaches for ALS. While these reversals remain extremely rare, understanding their biological mechanisms could open doors to future treatments3.

Would you like to dive deeper into the research or explore potential therapies being studied? 1www.als.org   2www.neurology.org  3alsnewstoday.com

What is the significance of the IGFBP7 gene mutation?

The IGFBP7 gene plays a crucial role in regulating insulin-like growth factors (IGFs), which influence cell growth, division, and survival. Mutations in this gene can disrupt these processes, leading to various health conditions.

For example, a specific splice-site mutation (830-1G>A) in IGFBP7 has been linked to retinal arterial macroaneurysm with supravalvular pulmonic stenosis (RAMSVPS), a disorder affecting blood vessels in the eyes and heart.

Beyond its role in vascular health, IGFBP7 is also involved in cell adhesion and extracellular matrix interactions, which may contribute to cancer progression. Additionally, recent research suggests that IGFBP7 is a key component of the senescence-associated secretory phenotype (SASP), meaning it can induce cellular aging and influence immune system function.

Would you like to explore how this gene might be relevant to ALS research or other diseases? 1medlineplus.gov   2en.wikipedia.org 3biosignaling.biomedcentral.com

What recent studies have explored IGFBP7’s role in diseases?

Recent studies have highlighted the multifaceted role of IGFBP7 in various diseases:

  • 2024 review explored IGFBP7’s involvement in tumor progression, acute kidney injury, and reproductive processes. It examined how IGFBP7 regulates cell proliferation, apoptosis, and migration, making it a key player in disease mechanisms.
  • study on ALS reversal found that a mutation in IGFBP7 is linked to rare cases where ALS patients experience partial or full recovery. Researchers suggest that inhibiting IGFBP7 could have therapeutic potential for ALS.
  • Another study investigated IGFBP7’s role in renal and cardiovascular outcomes among patients with type 2 diabetes. Higher IGFBP7 levels were associated with increased risk of kidney disease progression and cardiovascular events.

Would you like to explore how IGFBP7 could be targeted for future treatments?  1www.frontiersin.org   2alsnewstoday.com  3diabetesjournals.org

What potential therapies target IGFBP7 based on these studies?

Several promising therapies are being explored to target IGFBP7 based on recent studies:

  • Vaccine Therapy for Heart Failure: Researchers have developed a vaccine targeting IGFBP7 to mitigate its harmful effects on endothelial cells in heart failure. In mouse models, this vaccine improved cardiac function by reducing IGFBP7-induced oxidative stress and enhancing insulin signaling.
  • Psoriasis Treatment: A study identified a subset of endothelial cells with high IGFBP7 expression that contributed to immune cell infiltration in psoriasis. Targeting IGFBP7 showed potential in restoring vascular integrity and reducing skin inflammation.
  • Angiogenesis and Vascular Remodeling: IGFBP7 plays a complex role in blood vessel formation. Some therapies aim to modulate its activity to enhance tissue regeneration and repair.

These findings suggest that IGFBP7 could be a viable therapeutic target for multiple conditions.

Would you like to explore how these therapies might be adapted for ALS treatment? 1www.ahajournals.org  2www.jci.org  3www.frontiersin.org

What is the efficacy of these therapies in clinical trials?

Clinical trials have explored the efficacy of IGFBP7-targeted therapies in various diseases:

  • Cancer Treatment: A study on metastatic melanoma found that restoring IGFBP7 function induced apoptosis in cancer cells and significantly suppressed tumor growth in mouse models.
  • Leukemia Research: In acute lymphoblastic leukemia (ALL), IGFBP7 was shown to prolong IGF1 receptor activation, promoting cancer progression. However, IGFBP7 knockdown or antibody neutralization reduced leukemia progression in vivo, suggesting it as a potential therapeutic target.
  • Immunotherapy for Bladder Cancer: Research indicates that high IGFBP7 expression correlates with aggressive bladder cancer and reduced immunotherapy response. Scientists are investigating IGFBP7 as a novel target for combination immunotherapy.

These findings suggest that IGFBP7 plays a complex role in disease progression and treatment response. Would you like to explore specific therapies in more detail? 1aacrjournals.org 2ashpublications.org 3www.frontiersin.org

ALS Reversals: What Are They and How Can We Make Them Happen More Often? | The ALS Association

Race to a cure for ALS

Finding Joy in the Routine: How Our Tuesday Movie Nights Became a Lifeline
thekaregiver

Before ALS became part of our story, Tuesday nights were already spoken for—reserved for popcorn, fresh cookies out of the oven that Tony’s mom made, and our usual spots on the couch. Our weekly movie night wasn’t anything extravagant, just a little midweek ritual we looked forward to. We started it simply because we enjoyed it. Now, we hold onto it with even more appreciation.

ALS has a way of reshaping everyday life. Schedules shift. Priorities change. The pace slows down, but the emotional and physical weight increases. In the midst of all of that, our Tuesday movie night has remained a steady, comforting constant.

It gives us something to look forward to—something that isn’t an appointment or another round of logistics. It’s a mental break.

It may seem like a small thing, but having a consistent plan in the week matters so much. Especially for caregivers and people living with ALS, these kinds of traditions offer emotional relief, a sense of normalcy, and even joy.

For anyone navigating something hard: find your “movie night.” Whether it’s a show you love, a weekly game, or an ice cream date—consistency brings comfort. It doesn’t have to be big. It just has to be yours.

Our Tuesdays are still circled on the calendar. And now more than ever, we’re grateful for them.

#Instagram

Neurologist, Dr. Richard Bedlack, MD PhD runs the ALS Clinic at Duke Medical School. He is a pioneer in the ALS Community, leading the research into the causes of ALS reversals. As of July 29, 2020, he has confirmed 48 reversals. In this presentation, he discussed that research as well as new studies he’s conducting into Gut Health, Clenbuterol and Methycobalamin. 


• #ALSAwareness
• #ALSCommunity
• #LivingWithALS
• #CaregiverSupport
• #CaregiverLife
• #ALSFamily

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