Supporting a Patient-Led Movement to Cure ALS — and Other Rare Diseases
The Chan Zuckerberg Initiative (CZI) 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.