Adjusting ALS research funding to drive and respond to real world changes



Poster Number: M210


Kuldip Dave, PhD, The ALS Association, Paul Larkin, PhD, The ALS Association, Melody Schaeffer, PhD, ALS Association, Sarah Parvanta, PhD, MPH, The ALS Association, Neil Thakur, PhD, The ALS Association

The ALS research space has changed dramatically since the 2014 Ice Bucket challenge, and eventually, the clinical care is changing too. How should philanthropic research funding adjust to these changes?
1)How can modest research investment leverage additional funding?
2)How can research drive changes in clinical care in a timely manner?
3)How should research portfolios shift as science and clinical care advances?
1)The ALS Association has seen follow-on funding from $3-$6 for every $1 invested. At the same time, US federal investment has grown 4-fold since the 2014 Ice Bucket Challenge.
2)The ALS Association’s 2020 adoption of the goal to make ALS a livable disease within a decade until we can find cures for all forced us to reassess our portfolio. We will present how our portfolio has evolved in response to our strategy and external funders. Since 2021, 3 new therapies (oral radicava, relyvrio, qalsody) have been approved, some directly impacted by Association work.
3)Most ALS research focuses on the causes of ALS and finding cures. Yet the US seems unable to deliver the current standard of ALS care to most Americans. We will present data from 2016 to 2021 showing only 30% of Medicare recipients received the generic disease modifying therapy riluzole, and describe our new quality improvement portfolio.
Philanthropic research can help drive broader changes in research funding and clinical care. But as it succeeds, it needs to shift focus to newer research problems to get clinical impacts. The ALS research community has historically underinvested in research to improve quality and delivery of care. Philanthropy needs to coordinate with other nonprofits and government funders to fund research workforce and infrastructure necessary to understand how to deliver ALS care effectively.