ALS, commonly known as Lou Gehrig’s disease or motor neurone disease (MND), is a cruel disease that has challenged patients, their families, and the medical community for generations. Although ALS is considered rare, its impact on individuals, families, and communities is devastating. The disabilities it causes make ALS the most expensive of neuromuscular disorders, with total costs estimated at more than $1 billion a year in the United States alone. 

The ALS community desperately needs better ways to diagnose, measure, treat, and manage ALS. Still, progress has been constrained at all points by a lack of understanding of the disease’s basic biology and pathological mechanisms across the full diversity of people living with ALS. Strategic philanthropy can help overcome the barriers hindering progress in the ALS field, offering leadership and resources needed to understand and treat ALS for everyone. 

This report by the Center for Strategic Philanthropy has identified a number of areas where an infusion of philanthropic capital could transform how we understand, manage, and treat ALS in all people living with the disease. There is an untapped opportunity for philanthropists to pull the levers that will drastically improve the quality of life and health outlook for all people living with ALS.

Tambourine has launched the ALS Breakthrough Research Fund in partnership with the Center for Strategic Philanthropy. In May 2023, the ALS Breakthrough Research Fund released its inaugural Request for Proposals (RFP).