Science and evidence-based policies. We are committed to evidence-based discourse on every aspect of ALS/MND policy, care services, and research.

Deliberation and debate. We prize open discourse and space for thoughtful debate as the best route to good policies, programs, and science.

Results-based metrics. We are focused on promoting and supporting policies, research, and research design that stand the best chance of speedily delivering effective therapies to slow, stop, or prevent ALS/MND. We understand that reasonable people can differ on how best to advance this principle and will host debates on it. We are uninterested in symbolic victories and performative politics as measures of success.

Ethics. We are committed to the principle that ALS/MND policy, caregiving, resource allocation and research should always account for and be held accountable for ethical considerations.

Obligations to future generations. We embrace the position that resource allocation and policies today must be designed not just to serve the immediate demands of PALS today but also future generations of PALS.

Global obligations. We embrace the position that funding, policies, and research priorities generated in the US – by the US government, US research entities, and ALS non-profits – should serve not just Americans with ALS/MND but the global community of PALS.

Obligations to wider society. We embrace the goal of advancing the interests of PALS, but are also committed to wider concerns to ensure the most effective, cost-effective, and fair use of taxpayer money.

Constructive criticism. Criticism and scrutiny of the many public, private, and non-profit institutions involved in the ALS/MND space are essential, but must be done constructively, with an eye toward improving their performance, not undercutting their legitimacy.

Keeping tough conversations civil. In our deliberations, debates, and disagreements, we commit to showing one another empathy and grace, always remembering the very difficult private burden each person living with this disease is shouldering.