07/21/2026
Over years of working with people living with ALS and their families throughout every stage of the disease, we noticed a pattern that we couldn’t ignore. Clients who, despite every tool, customization, and innovation we had to offer, slowly lost the ability to reliably communicate. It wasn’t End of Life or a device or training problem—it was something different that we realized had no name, no definition, and no dedicated resources.
So we brought it to our community. This past spring, we hosted a roundtable and an open training session attended by hundreds of pwALS, caregivers, and practitioners who shared their experiences and helped us shape what a resource on this topic needed to say.
Today, we’re proud to share what came from those conversations: two free resources that define “End of Communication” and help guide people living with ALS and their caregivers through this difficult stage.
We know this is an emotionally heavy topic, and want to be clear that End of Communication will not be the experience for every person with ALS. If it doesn’t feel like the right conversation for you right now, that’s okay. These resources will be here if or when you need them.
We think of these materials as the beginning of a conversation that’s long overdue. A huge thank you to the community that helped make them possible. We ask for your email to access these resources so that we can follow up to gather feedback and continue improving these over time.
Read the full story and access both resources at: https://buff.ly/F6l11sL