Federal Budget Bill Boosts Spending on ALS Research


The fiscal year 2022 government funding bill Congress passed this week includes nearly $200 million for ALS research and programs. It provides funding for the government for the current year (Oct. 1, 2021- Sept 30, 2022).

New this year is funding for the ACT for ALS, which was signed into law in December. In addition, Congress provided $1 million to support a National Academies of Sciences study that will bring together experts to devise a blueprint to make ALS livable. Funding was maintained at the Department of Defense ALS Research Program and at CDC for the ALS Registry. As in past years, Congress increased funding for the National Institutes of Health.

Total federal spending on the fight against ALS increased by over 20 percent from the previous budget.

The ACT for ALS, which passed Congress with overwhelming bipartisan support, established a framework for expanded access to experimental treatments, along with new mechanisms for funding research. Knowing that people living with ALS need access to treatments now and research for new treatments and a cure, Congressional leaders included nearly $30 million to fund programs created in that bill, including an additional $25 million at NIH and $2.5 million at the Food and Drug Administration. 

Congress provided $40 million for the ALS Research Program at the Department of Defense and maintained $10 million for the ALS Registry and Biorepository. NIH funding was boosted to $115 million.

 “We could not have done this without the tireless work of our ALS advocates, who committed to doing whatever it takes to make sure Congress provides the resources needed to provide new treatment options to cure and prevent ALS” said Denise Bailin, Director of Government Affairs and Policy.

ALS advocates lobbied Congress demanding funding for ALS last year, sending more than 13,000 letters, posting more than 3,000 social media messages and hosting more than 600 meetings with members of Congress.

Congress must now turn its focus on making sure money is appropriated for the 2023 fiscal year, which runs Oct. 1, 2022 to Sept. 30, 2023. Advocates should be ready to lobby their members of Congress once the House and Senate Appropriation’s “Dear Colleague” letters are launched in the near future.

To learn more about the appropriations process, listen to Denise Bailin, director of government affairs and policy at The ALS Association, talk about the Association’s appropriations priorities on a recent episode of Connecting ALS.


Submitted by: Donna C. on Tue, 11/08/2022

On the right track getting specific ALS language in appropriation bills but we must also demand accountability for the expenditure of the dollars. Where did it go, what were the results - a legal requirement of GPRA. Additionally $200 million is a spit in the $40billion dollar budget. Since the 1980s, AIDS has received $3B a year, as Senator Cassidy most famously stated, "if you take your meds, you are more likely to die from Alzheimer's than AIDS." In order to cure and treat ALS we need to demand billions for ALS research. Thank you for all you do.

Submitted by: Kapil S. on Sat, 06/17/2023

We wonder what’s going on with this new money. Are we making process. Is there a mechanism to track the status and process. Thank you.

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