A 2020 federal spending agreement reached Monday between House and Senate negotiators would fully fund key spending priorities of The ALS Association and its advocates. ALS advocates have sent 13,800 letters and 3,600 tweets and held more than 700 meetings in the past year to secure full federal funding of ALS research. 

The fiscal year 2020 funding package would provide $20 million for the Department of Defense ALS Research Program (ALSRP), doubling the funding level from 2019. The ALSRP is the only federal funding stream dedicated exclusively to ALS research. Increased federal funding will allow ALSRP to invest in more research projects that other agencies or industry may not be inclined to fund. 

Additionally, the funding package would provide $10 million in funding for the National ALS Registry. The bill also calls for an updated report on the Registry within the next year. 

Finally, the spending package would provide $41.7 billion for the National Institutes of Health, a $2.6 billion increase from last year. The NIH is the largest public funder of ALS research in the world, spending $83 million on ALS research in fiscal year 2018.

“This is a clear victory for people living with ALS and their families,” said Kathleen Sheehan, Vice President of Public Policy at The ALS Association. “By working with Congressional champions and mobilizing our 39 chapters and more than 20,000 grassroots advocates, we were able to leverage the community of activists we have built up over the years to protect and increase critical research funding.”

Sheehan added: “We want to acknowledge the Muscular Dystrophy Association, I AM ALS, and the entire ALS Community for supporting this effort. Doubling funding for ALSRP and continued funding for the National ALS Registry are important steps in our fight to find treatments and cures for ALS.”

The ALS Association spearheaded the campaign to preserve and increase federal funding for ALSRP, the Registry, and NIH. 

The bill now moves to a full vote in the House and Senate where it is expected to pass and be signed by President Donald Trump.