Rare As One Partner
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 less than five 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. The organization seeks 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 to also reimagine how people 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 funding, and transform and accelerate progress against their diseases.
For more information and to explore stories from ALS patients and their families, visit iamals.org.
“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 to also reimagine how people advocate and fight every rare disease.”
