| Author: Sylvie Raver, PhD; Quinton Banks, PhD; Megan Van Der Horst, PhD; and Cara Altimus, PhD

Amyotrophic Lateral Sclerosis (ALS) Giving Smarter Guide

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Brain Disorders ALS

ALS is a fatal neuromuscular disorder that leads to the progressive loss of voluntary muscle movement. This disease has long devastated patients and families and imposes more than $1 billion in annual costs in the US. Despite its significant impact, the basic biological mechanisms of ALS remain poorly understood.
In 2021, SPARC and Tambourine Philanthropies partnered to analyze the ALS funding and research landscape and published ALS: A Giving Smarter Guide. The guide pinpoints where focused philanthropy can accelerate progress. Key priorities include to:

  • Resolve the underlying mechanisms of ALS through support for basic research
  • Improve understanding of ALS epidemiology and etiology across the full diversity of ALS patients
  • Expand and improve therapeutic options
  • Improve access to high-quality care for all ALS patients
  • Build a diverse and multidisciplinary talent pipeline

Infusing philanthropic capital into these areas has the potential to drastically improve outcomes and quality of life for those affected by ALS.