The Chan Zuckerberg Initiative (CZI) has awarded I AM ALS a $453,000 grant to develop ways to connect amyotrophic lateral sclerosis (ALS) stakeholders and the public in the fight against ALS and other rare disorders.
As part of CZI’s wider effort to accelerate investigations into rare diseases, the one-year grant will fund the organization’s quest to produce open-source digital tools that can be used by neurological and rare-disease communities to help find therapies and cures. Designed to perform a specific task, open-source tools have source codes that can be freely used or modified by others.
In addition to challenges in ALS, the plan is to address issues in all rare disease and neurological fields, where patient communities lack resources and often are isolated, according to a CZI press release. Disease organizations can use the tools and advocacy model to help them heighten awareness, increase participation and advance research.
CZI’s Rare As One Project, of which the grant is part, aims to support and unite rare disease communities. As many as 7,000 rare diseases affect 400 million people globally, its website states, and less than 5% have approved treatments.
“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 Tania Simoncelli, CZI science policy director and Rare As One Project lead.
“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,” she said.
For ALS patient and I AM ALS co-founder Brian Wallach, finding an ALS cure means being on track to discovering cures for other neurodegenerative disorders such as Alzheimer’s, Parkinson’s and multiple sclerosis.
“Collaboration is key to advancing cures, and we are stronger when we fight together, both across diseases and organizations,” he said. “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.”
Through its Neurodegeneration Challenge Network, CZI seeks to bring together experimental scientists from diverse research fields to uncover the underlying causes of ALS and other neurodegenerative diseases.
Founded earlier this year, the patient-led I AM ALS seeks to: bring together patients, organizations, advocates and researchers to deliver vital and novel patient resources; empower and mobilize patients; and change the public’s understanding of ALS, with a goal of saturating the research pipeline with innovative new medicines.
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