New Report Highlights Progress Made Because of ALS Ice Bucket Challenge

Global Phenomenon Led to $1 Billion in ALS Research, Expanded Care Access, and Increased Government Support for ALS Programs

October 30, 2024 (Arlington, VA) – In 2014, the ALS Ice Bucket Challenge took the world by storm, raising an unprecedented $115 million for ALS research, care, and advocacy. Now, ten years later, a new report from RTI International, commissioned by the ALS Association, reveals the lasting impact of those funds on the fight to end ALS.

According to the report, the funds raised by the ALS Ice Bucket Challenge have dramatically accelerated ALS research, improved access to care for people living with ALS, and increased government support for ALS programs. The data highlights significant strides in the development of new treatments and better care brought about because of the outpouring of financial support for the ALS Association.

We are incredibly grateful to everyone who participated in the Ice Bucket Challenge and all those who have kept fighting with us. Your involvement has played a critical role in driving the progress we’ve made. We have an amazing community of people living with ALS and their loved ones and we must act urgently to make ALS livable and cure it."

Calaneet Balas

President and CEO of the ALS Association

More ALS Research - Doubling Investment, Expanding Impact

Over the past decade, the ALS Association has awarded $155 million in research grants across 560 projects—more than double what was invested in the 23 years prior to the ALS Ice Bucket Challenge. RTI's analysis found that nearly 80% of grantees used these funds to expand their ALS-focused research. For every dollar received from the ALS Ice Bucket Challenge, grantees reported follow-on funding of $7.01, bringing the total impact of the challenge to nearly $1 billion in ALS research funding.

Key breakthroughs include the identification of new therapeutic targets, biomarkers, and genes that have accelerated progress toward potential treatments.

More Care - Expanded Access to Critical Services

The report also highlights major improvements in the care provided to people living with ALS. Since 2014, the number of multidisciplinary ALS clinics has more than doubled, growing from 100 to over 220 today. The ALS Association’s support of ALS Certified Treatment Centers of Excellence^™ has increased 3.5 times, from 30 clinics to 108. This expansion, coupled with the introduction of the Durable Medical Equipment Loan Program, has improved the quality of life for thousands of ALS patients by providing quicker access to vital equipment.

The ALS Association’s advocacy efforts have also led to better coverage from Medicare, the Veterans Administration, and private insurers, ensuring people living with ALS receive the care they need without delay.

More Advocacy - Increasing Government Funding for ALS

Through strategic lobbying and advocacy, the ALS Association has successfully increased federal funding for ALS research and care. The Department of Defense's ALS research program funding grew from $10 million to $40 million, while funding from the National Institutes of Health (NIH) increased from $52 million in FY 2016 to an estimated $218 million in FY 2024. Additionally, state appropriations have earmarked more than $25 million for ALS programs in 15 states over the past two years.