I AM ALS

Founded: 2019
Headquarters: Washington, DC
Annual Budget: ~$2.3 million
Founders: Brian Wallach and Sandra Abrevaya
Website: iamals.org

What it does
I AM ALS is a patient-led organization that supports people living with ALS and drives policy change to speed up treatment and find a cure. It offers direct support to patients and caregivers, helps them navigate care and resources, and mobilizes thousands of advocates to push for better research, access, and funding. Everything is led by people who are directly affected.

Why it matters
ALS is a deadly and currently incurable disease. I AM ALS is changing what’s possible by turning patients into powerful advocates. Since launching, the group has helped secure over $1 billion in new federal funding for ALS research and passed two major bipartisan laws: the ACT for ALS (2021) and the Elizabeth Dole Home Care Act (2025). Their work has helped patients get access to promising treatments and expanded support for caregivers, especially veterans.

Their endgame is bold and specific: make ALS a treatable, livable disease — and ultimately cure it. Along the way, they are reshaping what patient-driven activism looks like in health care.

In context
Most disease nonprofits focus on either research or support. I AM ALS does both — and adds policy, tech, organizing, and storytelling. It’s been called a blueprint for how patients can lead their own movement and drive national change. And it’s already inspiring similar efforts across other diseases.