Executive Summary

Collective action is any form of organized acts carried about by a group of people in order to address their needs. If multiple populations impacted by neurodegenerative diseases work together as one, we can improve lives.

People need better services now. “Patient-centered” care is losing its meaning. The person in this proverbial “center”, by definition, sits passively with services offered to them. Sadly, rarely designed “with” them. Care, therefore, calcifies into topdown silos driven from the system point-of-view.

Those that need complex care, like those with neurodegenerative diseases, might need to find, receive, maintain, and juggle ten or fifteen “person-centered” programs. Each sitting in its own silo. More durable change finds root, however, when care is not only centered around but also driven by the people most impacted, those living with disease and their care partners. The aim: to build bridges across silos.

Adira Foundation has labored mightily to find, champion, and build better help driven by people most impacted by neurodegenerative diseases. To prove the concept, Adira Foundation (Adira) focused principally, though not exclusively, on five populations: those living with ALS, Alzheimer’s and related dementias, Huntington’s disease, multiple sclerosis, and Parkinson’s disease — as well as their care partners.

Download the Blueprint for Action