Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease causing muscle weakness over time. Its cause is unknown, which implies that no cure is available for the 1500 individuals diagnosed with ALS in the Netherlands. As their life expectancy is short, our goal is to maintain their quality of life at the highest level for as long as possible by establishing new research initiatives to generate assistive devices, which adapt according to disease progression. This can be achieved best by involving the ALS patients themselves and their caregivers to stimulate and discuss new research initiatives with all relevant stakeholders.