How Scleral Lenses Helped an ALS Patient Maintain Communication
Meet Jacob When 23-year-old Jacob Harper from Winfield, West Virginia, first heard the words “You have ALS,” in March 2022, he and his father sat in shock. Neither had a clear understanding of what the diagnosis meant. His mother, however, turned pale—she knew the weight of those three letters. Amyotrophic lateral sclerosis, or ALS, is a relentless disease. For Jacob, it was not just ALS but an ultra-rare genetic version, linked to the P525L FUS mutation. Doctors told him to expect only one to three years. Jacob, once an avid outdoorsman who loved hunting, fishing, and working as a machinist and a welder, suddenly faced a future of increasing paralysis and loss. Yet, through determination, faith, and access to an experimental drug called ION363—nicknamed “Jacifusen”—he has lived beyond those initial predictions. Even as the disease advanced, Jacob and his family found new ways to fight for quality of life. One of the most unexpected breakthroughs came not from a drug or machine, but from a pair of lenses. Losing the ability to communicate As ALS progressed, Jacob eventually lost the ability to move his eyes. He could no longer blink, and his eyelids wouldn’t stay open. Severe dry eye followed, leaving his eyes painfully irritated and threatening to take away his ability to watch television, enjoy car rides, or even communicate. At times, his parents resorted to using cosmetic tape to hold his eyelids open. It was an exhausting, imperfect solution that underscored how fragile his remaining independence had become. [...]