Care Services Manager

Statement from the ALS Association on Chris Johnson's ALS Diagnosis. Arlington, Va. (June 29, 2026) - We are deeply moved by the courage Chris Johnson has shown in sharing his ALS diagnosis with the world. We stand with Chris, his wife Brittany, and their family as they navigate this incredibly difficult journey. "I still think the same. I still dream. I still love my family. My body just doesn't cooperate." Chris's words capture something we hear from so many people living with ALS. We are inspired by his determination to fight, and by his commitment to using his platform to raise awareness for the ALS community. What people need to know about ALS: * ALS is a fatal neurodegenerative disease that gradually takes away a person's ability to walk, speak, swallow, and eventually breathe. It affects the motor neurons in the brain and spinal cord that control voluntary movement. As those neurons deteriorate and die, the brain loses its ability to initiate and control muscle movement. * ALS does not discriminate. As Chris noted, his case is sporadic ALS - meaning it occurred with no family history. About 90% of all ALS cases are sporadic. * Every 90 minutes, someone in the United States is diagnosed with ALS - and someone loses their battle with it. * The ALS Association has a strategic plan to make ALS livable and cure it. To get there, we need to accelerate research, optimize current treatments and care, and reduce the harms of ALS. * ALS can be difficult to diagnose. There is no single test that confirms ALS. Because its early symptoms - muscle weakness, slurred speech, difficulty gripping - can resemble other conditions, people often see multiple specialists before receiving a confirmed diagnosis. This delay can mean lost time for treatment and support, which is why the ALS Association developed the thinkALS tool to help clinicians identify and refer patients to ALS specialists sooner. * There is currently no cure for ALS, and it is fatal. The typical life expectancy following a diagnosis is typically two to five years, though every journey is unique. * Research is making promising advancements and there is real reason for hope. We invested in early antisense technology which led to development and FDA approval to Qalsody (tofersen), the first-ever gene-targeted therapy for ALS. There is evidence that Qalsody(R) may not just slow disease progression, but in some cases help reverse some of the lost function, something that scientists did not think possible. * Chris has said he is participating in a clinical trial, reflecting the growing pipeline of promising treatments the ALS Association is proud to help fund. We are committed to accelerating the path from scientific discovery to treatments that reach every person living with ALS. Our mission - and how you can help. The ALS Association's mission is to make ALS livable and cure it. Here is how you can make a difference: * Learn more about ALS and share Chris's story * Donate to ALS research * If you or a loved one has been diagnosed, contact us. The ALS Association offers care services, support groups, and connections to certified treatment centers across the country. * Call our helpline at 1-800-782-4747 or visit ALS.org To Chris: thank you for choosing to fight - not just for yourself, but for the tens of thousands of Americans living with ALS today. We are honored to walk this road alongside you. About the ALS Association The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The mission of the ALS Association is to make ALS livable and cure it. For more information about the ALS Association, visit our website at www.als.org. About ALS Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. The disease is always fatal, usually within five years of diagnosis. Few treatment options exist, resulting in a high unmet need for new therapies to address functional deficits and disease progression. Manager, Communications June 29, 2026 Article Topic ALS Mission ALS Awareness