RAO Partner

Rare As One Partner

Portrait of Brian Wallach (left) and Sandra Abrevaya (right), the co-founders of I AM ALS
Brian Wallach, who was diagnosed with the rare disease Amyotrophic lateral sclerosis (ALS), and Sandra Abrevaya are the co-founders of I AM ALS. Photo courtesy of I AM ALS.

I AM ALS

Amyotrophic lateral sclerosis (ALS) is a terminal neurodegenerative disease that robs people of their ability to move, speak, eat, and breathe, usually in under 5 years. The causes of ALS remain elusive, and there are no effective treatment options. I AM ALS aims to change that. 

Brian Wallach co-founded I AM ALS with his wife Sandra Abrevaya after receiving his ALS diagnosis in November 2017 to answer the central question: “How do we find a way to empower people who are living with ALS to be a part of finding the solution for their disease?” 

The Chan Zuckerberg Initiative supports I AM ALS so it can create tools for building a movement that connects patients, caregivers, clinicians, researchers, foundations, corporations, and the public in the fight against ALS. Brian says, “We have a favorite saying within our foundation, which is, ‘What’s done in secret is done in vain.’ We hope that we can partner with CZI and other groups to not just build a model that can reimagine how we fight ALS, but reimagine how people advocate and fight every rare disease.”

The open source digital tools and advocacy model developed by I AM ALS will be made available to other disease organizations to help them raise awareness, increase engagement, and transform and accelerate progress against their diseases. 

We have a favorite saying within our foundation, which is, ‘What's done in secret is done in vain.’ We hope that we can partner with CZI and other groups to not just build a model that can reimagine how we fight ALS, but reimagine how people advocate and fight every rare disease.

Learn How We Support Science

Science Funding

Learn more about funding opportunities.

Hear Rare Disease Stories

Hear Rare Disease Stories

Listen to The Story Collider podcast featuring stories about patients who are driving progress against rare disease.