Association Volunteers Lend Time to Push for Increased Federal Funding for ALS


ALS volunteers and leading advocates held more than 200 meetings with members of Congress and their staff during The ALS Association’s virtual fly-in event on April 19, focused largely on securing increased federal funding for ALS research. Advocates from across the nation made over 250 calls to their members of Congress to support our appropriations requests.


Congress is currently putting together a series of appropriations bills, which establish funding levels for various federal programs for the fiscal year that will begin October 1, 2023. The ALS Association is asking Congress to expand federal funding for ALS research to $345 million across several programs, an increase of 38 percent from the $250 million Congress appropriated for the current fiscal year.

  • $100 million to fully fund the Accelerating Access to Critical Therapies (ACT) for ALS Act (currently funded at $80 million)
  • $150 million for research at the National Institutes of Health (currently funded at $120 million)
  •  $80 million to fund ALS research at the Department of Defense (currently funded at $40 million)
  • $15 million for research at the CDC Registry (currently funded at $10 million)

Federal funding for ALS research must be expanded exponentially to provide new treatment options to cure and prevent ALS.

Thanks to the ALS advocates and Association leaders who volunteered their time to help make ALS livable for everyone, everywhere, until we can cure it.

To learn more about how you can get involved and become an ALS advocate today, visit our website here.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at


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Submitted by: Ryan V. on Fri, 06/30/2023

I have Huntington's disease and run a Facebook group focused on research and advocacy. My background is financial.

I made a quick spreadsheet showing Huntington's disease costs the USA $15 billion annually.

How much does ALS cost USA annually?

I want to merge effort on rare neurological and ask for 3 billion annually to ALS til cured, then to Huntingtons and down the line and I think the cost of the illness justify it.

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