New Report Quantifies Acceleration of ALS Research Following the Ice Bucket Challenge

June 14, 2019

RESEARCH TRIANGLE PARK, N.C. — A new report from RTI International, an independent, nonprofit research institute, shows that the 2014 Ice Bucket Challenge enabled The ALS Association to raise $115 million. With that money, ALS researchers made scientific advances, care for people living with ALS expanded, and investment in disease research from the federal government also grew.

RTI evaluated the Association’s grant records and NIH funding records, data from research projects funded through Ice Bucket Challenge funding and surveys of ALS researchers worldwide to understand the impact of Ice Bucket Challenge investments.

RTI’s study found that researchers used their funding for new clinical trials to test potential treatments, and the Association’s clinical network saw a 50 percent expansion. After the Ice Bucket Challenge, researchers with funding from the Association discovered five new genes connected to ALS, making an impact on the fight against this disease.

The Association also used Ice Bucket Challenge money to invest in more researchers, expanding the network of scientists working to develop treatments and a cure. From 2014 to 2018, The ALS Association awarded 322 grants to 237 different scientists for ALS research, RTI reported. Collaborations increased from 71 grantees forming 229 unique co-author pairs in 2014 to 96 grantees forming 471 unique co-author pairs in 2018.

“Since the ALS Ice Bucket Challenge, researchers funded by the Association collectively increased their scientific output by 20 percent, measured by the annual count of published journal articles authored by at least one grantee,” said Sarah Parvanta of RTI. “This number is expected to increase once all published articles from 2018 have been catalogued in bibliographic databases. The number of peer-reviewed articles acknowledging the support of The ALS Association more than doubled since the Challenge.”

According to the RTI report, the Association and the researchers it funds have effectively leveraged Ice Bucket Challenge donations to increase funding of ALS-related research from the NIH, the world’s largest funder of research. Since the Challenge, NIH has invested $415.9 million in researchers funded by the Association, including $208.6 million in follow-on funding.

Since the Ice Bucket Challenge, The ALS Association also expanded its network of clinical providers from 100 Certified Treatment Centers of Excellence, Recognized Treatment Centers, and Affiliated Clinics in 2014 to 156 today.

RTI reached out directly to researchers who received support from The ALS Association to ask about the impact of Ice Bucket Challenge resources. Nearly 53 percent of researchers responded to this survey. Of those respondents, 84 percent said support from the Association since the Challenge accelerated their work quite a bit or very much, while 72 percent of the respondents said funding from the Association improved their ability to receive additional funding.

To view the full report, click here.