Supporting a Patient-Led Movement to Cure ALS — and Other Rare Diseases

REDWOOD CITY, CALIF. (September 25, 2019) — The Chan Zuckerberg Initiative (CZI) today announced $453,000 in funding for I AM ALS, a patient-led organization dedicated to raising awareness of Amyotrophic lateral sclerosis (ALS) and empowering patients to lead the search for a cure. ALS is a rare and terminal neurological disease that robs people of their ability to move, speak, and eat in just a few years. The causes of ALS remain largely unknown, and there are no effective treatment options. I AM ALS aims to change that. 

The one-year grant supports I AM ALS to develop tools for building a movement that connects patients, caregivers, doctors, scientists, foundations, corporations, and the public in the fight against ALS. I AM ALS will develop open source digital tools that can be leveraged by the neurological and rare disease communities to spur progress in finding treatments and cures.

This funding will help I AM ALS address challenges not just in the ALS community, but within the broader rare disease and neurological disease fields, where patient communities are too often disconnected from one another and lack resources. The 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. 

This support is part of CZI’s broader work to help patients and their families accelerate research on rare diseases, which affect approximately 400 million people globally. CZI’s Rare As One Project is committed to supporting and uniting these communities in their quest for cures.

“We’re thrilled to support I AM ALS in their grassroots efforts to build and strengthen the ALS community and encourage collaboration across groups working toward the shared goal of finding a cure for this devastating disease,” said CZI Science Policy Director and Rare As One Project lead Tania Simoncelli. “This open source organizing model for rare disease advocacy could be transformational for thousands of people and their loved ones who are tackling enormous challenges and hoping to build successful movements in their own rare disease.”

“Finding a cure for ALS means being on the path to finding cures for other neurodegenerative diseases like Parkinson’s, Alzheimer’s, multiple sclerosis, and beyond,” said I AM ALS co-founder and ALS patient Brian Wallach. “Collaboration is key to advancing cures, and we are stronger when we fight together, both across diseases and organizations. 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.” 

CZI also supports research into understanding the underlying causes of neurodegenerative diseases like ALS, Alzheimer’s, and Parkinson’s disease. The CZI Neurodegeneration Challenge Network aims to bring new ideas and new people into the field of neurodegeneration, support them with well validated tools and resources, and encourage them to look at this problem from a cross-disease perspective.

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About I AM ALS

Founded in 2019 by Brian Wallach and his wife, Sandra Abrevaya, I AM ALS was born out of their desire to change the future for Brian and the thousands of other ALS patients in the world. I AM ALS brings together patients, advocates, organizations and scientists to deliver critical and innovative resources for patients, empower and mobilize patients and their networks to lead the fight for a cure, and transform the public understanding of ALS with a goal of flooding the research pipeline with new, lifesaving drugs. A cure is possible … if we work together to re-imagine the fight against ALS. Learn more at https://iamals.org. 

About the Chan Zuckerberg Initiative

Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit chanzuckerberg.com.

About ALS

ALS is a disease that attacks cells in the body that control movement. It makes the brain stop talking to the muscles, causing increased paralysis over time. Ultimately, ALS patients become prisoners within their own bodies, unable to eat, breathe, or move on their own. Their mind, however, often remains sharp so they are aware of what’s happening to them. Today, ALS is always fatal and patients typically live for two to five years after diagnosis. That’s because scientists have yet to identify a cure for ALS. The recent acceleration of research has ensured that this will change. It is now not a question of if, but when there will be a significant treatment breakthrough that brings a cure within reach.