MORRIS ALS PRINCIPLES

Communicate with us and about us as though we are living with ALS/MND. We are partners with you in our own care... Today, we unite as leaders to end ALS/MND. We take ownership of our disease so that the road to cures is faster, equitable and more humane. We are not subjects or victims, and are only occasionally patients, a term which implies passivity. We are a relentless community working alongside researchers, policy-makers and clinicians to identify and cure this heterogeneous disease. We demand a seat at the table before decisions are made in drug trial design, research, healthcare policy or anything that affects our care. From this point forward, we will not tolerate siloes, disorganization or lack of urgency by any agency or organization that serves us. There will be Nothing About Us Without Us... The Morris ALS Principles were developed by those most impacted by ALS as a social contract for the community to follow that will drive a path forward. The Morris ALS/MND Principles..