Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that remains incurable, despite decades of basic and clinical research. Key stakeholders—including the US National Academies of Sciences, Engineering, and Medicine (NASEM)—are focusing efforts on advancing ALS research and improving patient outcomes, to make ALS a liveable disease. In collaboration and consultation with people living with the disease, the goals of these efforts are twofold: first, to accelerate therapeutic discoveries for ALS; and second, to individualise approaches to clinical care.