Brain Disorders
Amyotrophic Lateral Sclerosis (ALS)
ALS is a debilitating, fatal neurodegenerative condition that affects about 350,000 people at any given time. Although many experience similar symptoms, ALS can behave differently in different people. For most cases, ALS’ underlying causes remain unknown or poorly understood; about 90 percent of people with ALS have no known family history.
ALS has no cure, but investments over the past 20 years have driven scientific and clinical momentum. The ALS ecosystem includes hundreds of major stakeholders and thousands of people working in government, academic research, nonprofits, or industry.
Since 2021, SPARC has partnered with Tambourine Philanthropies to evaluate ALS research and funding and identify strategic philanthropic opportunities. SPARC’s multi-pronged approach to strengthening the field includes supporting a research program to advance understanding of ALS biology, providing guidance to nonprofits that drive research and development of therapies, and supporting patients and their families.
Our Work
Tambourine’s ALS Breakthrough Research Fund
Tambourine, the philanthropic initiative of Ben and Divya Silbermann, launched a research fund in 2023 that was grounded in a rigorous analysis of the ALS research ecosystem. The fund supports innovative basic and discovery-focused research worldwide that is poised to improve diagnosis, treatment, and cures for ALS.
Strategic Planning for the Robert Packard Center for ALS Research at Johns Hopkins
In 2024, the Robert Packard Center for ALS Research partnered with SPARC to develop a bold, forward-looking strategic plan and operational roadmap to guide its work over the next decade. Grounded in expert insight and collaborative visioning, the plan renews the center’s mission and sets a clear path to accelerate discovery and improve outcomes for people affected by ALS.
Amyotrophic Lateral Sclerosis (ALS): A Giving Smarter Guide
In 2021, SPARC and Tambourine Philanthropies collaborated on a comprehensive analysis of the ALS research and funding landscape, culminating in a Giving Smarter Guide. The report identifies high-impact opportunities where strategic philanthropic investment could significantly advance our understanding and treatment of ALS, ultimately improving outcomes and quality of life for individuals living with the disease.
