​ALS has become a hot topic this summer in the wake of Chris Johnson’s diagnosis. But what’s possible beyond reviving the Ice Bucket Challenge? The answer may surprise you. Johnson’s ALS diagnosis sent shockwaves through the NFL and the Nashville community, and the outpouring of support has brought the Ice Bucket Challenge back into the spotlight for a new generation. Yet twelve years after the original viral push raised millions for medical progress, the core question persists: why does ALS research still lag so far behind?
I spoke with Indu Navar, founder and CEO of Everything ALS, to uncover what has actually changed, what hasn’t, and what each of us can do right now to help. Navar, who lost her husband to the disease in 2019, did not mince words about the state of ALS care. The numbers are staggering and deeply troubling: in the United States, someone is diagnosed with ALS every 90 minutes, and someone dies from it every 90 minutes. The diagnostic process hasn’t meaningfully evolved since Lou Gehrig’s famous 1939 speech. “We’ve known this for 90 years,” Navar said. “And up to today, we’re still diagnosing somebody the same way and saying every 90 minutes, ‘you have 2 to 5 years to live.’ That’s what we did 70 years ago!”
She pointed to diseases that have seen real breakthroughs as a contrast. Multiple sclerosis now has roughly 40 different treatments available, and spinal muscular atrophy, a pediatric motor neuron disease, has seen near-cure therapies developed in the 21st century. By comparison, ALS has not seen anything approaching that level of progress.
The 2014 Ice Bucket Challenge raised enormous awareness, but Navar was clear about its limitations. For many participants, it began as a social media moment rather than a genuine charitable effort. The deeper understanding of what ALS does to the body—and how underfunded its research remains—never fully took root.
Funding is part of the problem, but Navar identified something more fundamental: ALS progresses rapidly. Patients deteriorate quickly, and families are devastated. Then they drift away from the cause as the loved one passes. “You really don’t get the staying power,” Navar explained. “The movement is a revolving door. You start a movement, everybody starts something when they’re shocked, and then it dwindles down.”
That revolving door means institutional knowledge exits with each new wave of families. New patients and caregivers enter the system lacking the foundation, asking the same basic questions about speech pathologists, occupational therapists, and treatment options that the previous generation already answered. This cycle is precisely why Navar started Everything ALS as a tech nonprofit. Her organization hosts expert talks where patients and families can ask questions, with the ultimate aim of creating a permanent resource—something more enduring than a fleeting campaign.
In this model, the group builds a lasting repository of knowledge that can be accessed long after the initial shock wears off. By facilitating ongoing conversations and expert-led discussions, Everything ALS strives to establish a continuous support system that can persist through the revolving door of awareness and interest. Navar envisions a platform where the most up-to-date information about care options, therapeutic approaches, and supportive services is readily available, helping to shorten the learning curve for new patients and caregivers and to ensure that critical questions are answered promptly.
The takeaway is clear: while awareness spikes, lasting progress depends on sustained engagement and practical resources. The Ice Bucket Challenge did much to illuminate ALS and mobilize people to care, but real advancement requires ongoing education, persistent funding, and a durable infrastructure that partnerships like Everything ALS are designed to provide. If you want to help right now, consider supporting organizations that offer expert-led conversations, reliable caregiving resources, and opportunities to participate in long-term research collaborations. These steps can help ensure that the momentum generated by Johnson’s diagnosis translates into durable improvements in care, treatment options, and the overall trajectory of ALS research.