Executive Summary

I AM ALS (IAA) was founded by husband and wife political organizing team Brian Wallach and Sandra Abrevaya after Brian’s diagnosis at age 37 to address the visible gap of an organization that truly centered the community and accelerated progress. They created a patient-led organization to amplify patient voices and advocates for their priorities and needs.

These needs are clear. Amyotrophic lateral sclerosis (ALS)- also known as Lou Gehrig's Disease- is 100% fatal, often progresses fast, and the medical and research industries are slow and methodical. The community’s goal is to change this orientation to action, faster, so people living with ALS can live better and longer lives.

IAA exists today as a convener to lift thousands of advocates out of isolation and into a movement. We change the landscape through a space for voices and collective action with a shared goal of curing ALS. The organization is not only led by patients and caregivers - including through the Board of Directors and staff impacted by the disease - but also driven by a community workforce that facilitates day-to-day action. Because IAA was founded and is led by individuals who are facing a terminal illness, the work remains laser focused on finding a cure, and in the process designing a new model for fighting rare diseases that can save hundreds of millions of lives. We have proven that combining an authentic patient-led movement with best practices from grassroots community organizing, digital technology, and patient navigation models can transform the ALS community and the disease.

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