Our definition of a Person Living with ALS (PALS) is broad and multi-generational. It includes people diagnosed with ALS/MND at all stages of the disease, and people who are currently asymptomatic but who are or could be carriers of the genetic mutation that causes ALS/MND in the genetic variant of the disease (about 10% of ALS case are genetic, and can be passed along within families; the other 90% of cases are “sporadic” -- causes currently unknown).

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We also include in our definition of a person living with ALS/MND the many millions of people globally who are not currently diagnosed with ALS but who will be at some point in their lives – perhaps next year, perhaps in 20 or 50 years. The policies and research priorities that we advocate today will have enormous impact on these future generations of PALS. As a basic ethical principle, we are committed to including their well-being and best interests in any discussion about current ALS/MND research and public policies. Nothing about us without them!