I AM ALS: A Community Approach to Combating the Disease
Brian Barrett’s article “My Friend Was Struck by ALS. To Fight Back, He Built a Movement” shares the work of Brian Wallach who was diagnosed with ALS and tapped into a lifetime of connections to give help and hope to the ALS community. The Wired article features Wallach’s story and organization, I AM ALS. I AM ALS raises awareness about the disease, centralizes and provides key resources to the community, and creates opportunities for patients through a patient-led, community centric model.
The article mentions that Wallach was called to start the ALS resource sharing model since he “…had seen firsthand some of the gaps in the framework of ALS treatment and support. There was the sense of isolation, that going public would upend his and Sandra’s world. And more practically there was the information vacuum…with whatever time he had left, Brian wanted to work to ensure that future ALS patients didn’t have to feel so alone.”
I AM ALS continues to remove barriers between patients and potential treatments as well as resources as does Bridging Voice. Bridging Voice’s mission is to enable and empower people with ALS and other neurodegenerative disorders to communicate by removing the barriers between them and assistive technology. Brian Wallach’s story and organization has an important message behind it: we are stronger together. We are proud to work alongside I AM ALS and other organizations dedicated to providing the ALS community with information, resources, support and hope throughout the progression of their disease.