Empowering the ALS Community Through Shared Experience
We are a patient-led initiative providing a gathering place for connection, resources, and advocacy. Built by those who live the journey.
Our Story
als.COMMUNITY was founded to honor Shelbie Oppenheimer, who spent twenty years living with ALS before passing in 2025. Inspired by her 1999 testimony before the U.S. Senate — where she called for families to be truly seen and understood — her legacy became the foundation for the "ALS Town Square" she dreamed of: a place where no one faces this disease alone.
That vision grew from a frustration familiar to anyone who has lived it. When ALS arrives, the systems meant to help are scattered, fragmented, and rarely built around the people who need them most. A group of community members who knew that experience firsthand came together to change it.
Officially launched in 2025, als.COMMUNITY is the first one-stop digital home for patients, caregivers, and everyone connected to the ALS journey. It's free, patient-led, and built from the ground up by people with lived experience — because that foundation is the only one worth building on.
We're here to connect people, share trusted knowledge, and support life with dignity and meaning beyond the diagnosis. Shelbie's fight continues.
Our Core Values
The guiding principles that shape everything we do.
Patient-Led
We center the lived experience in everything we do. The community is built by and for those intimately familiar with the realities of ALS.
Accessible Support
Resources, guidance, and connections available to everyone, regardless of where they are in their diagnosis or disease journey.
Unified Voice
Amplifying advocacy efforts through our collective strength to demand better care, faster research, and meaningful change.