Congress Approves Key Funding to Help Us Reach Our Goal to Make ALS Livable

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Congress’ work on spending bills for fiscal year 2022 reached a critical milestone as the full House approved its first spending package, combining seven appropriations bills including the Labor-HHS-Education and Agriculture-FDA bills. Thanks to the tireless efforts of ALS advocates across the country, the House included many of our aggressive requests for new and increased investments in research to find treatments and a cure, slow symptom progression, reduce the number of new cases, and increase the length and quality of life for every American living with ALS.

Through the passage of this spending package, the full House approved new funding for important initiatives at the National Academies and the FDA that will help us reach our goal of making ALS a livable disease while we pursue cures for ALS. The House also approved level funding (the same as last year) for the CDC National ALS Registry. In early July, the House Appropriations Committee approved level funding for the DOD ALS Research Program, but the full House will not consider the Defense spending bill before concluding their work for August recess.

Here is the status of fiscal year 2022 appropriations bills for each priority:

  • National Academies: Study to Make ALS Livable: The full House approved our $1 million request to commission a study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to make ALS livable.
  • FDA: Orphan Products Grants Program: The full House approved $5 million to fund research to expedite product development, foster innovative trial designs, and enabling natural history studies to better understand the disease progression and pathology.
  • CDC: National ALS Registry and Biorepository: The full House approved our $10 million request to help researchers identify candidates for clinical trials, identify risk factors for ALS and collect biological samples that will aid the search for treatments and a cure. 
  • NIH: The full House approved $49 billion in topline funding, which the NIH which the agency then allocates to each institute.
  • DOD: ALS Research Program: The House Appropriations Committee approved $40 million to fund clinical trials to pull through promising preclinical research and human studies into ALS drug development.

Next, the Senate must craft and pass its own spending bills. The ALS Association will aggressively lobby in support of House-approved funding for the National Academies study on making ALS a livable disease, the CDC National ALS Registry, and NIH, and for additional funding the House only partially provided for ALS research at the FDA’s Orphan Products Grants Program and the DOD’s ALS Research Program.

With 152 representatives and 34 senators having signed our ALS Appropriations Dear Colleague letter this year, we built a great base of support for our funding requests that we will continue to leverage throughout the rest of the annual process to fund the federal government. Ultimately, both the House and Senate must agree on final spending bills or pass a continuing resolution before October 1 to avert a government shutdown.

You can join our campaign to secure new and increased federal investments in ALS research. Visit to become an ALS advocate.

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