How ALS Association Advocates Boosted Congressional Funding for ALS Research

Last week Congress passed, and the president signed, a continuing resolution that will fund all federal programs at current levels through November 21. Before the continuing resolution expires, Congress must either pass full appropriations bills for the 2020 fiscal year or pass another continuing resolution. 

Now that a government shutdown has been averted until just before Thanksgiving, it is worth reflecting on the hard work and success The ALS Association and its advocates have had in securing funding for ALS research and to look ahead to what’s next.

Click here to become an advocate if you have not already!

Federal research funding for ALS is provided by the ALS Research Program (ALSRP) at the Department of Defense, the National ALS Registry at the Centers for Disease Control and Prevention, and the National Institutes of Health. So far, the full House of Representatives and the Senate Appropriations Committee have passed appropriations bills for the 2020 fiscal year that, if passed by both chambers before the continuing resolution expires, would fully fund ALS research at the following levels.

  • ALS Research Program: $20 million – a doubling of funds from $10 million last year – a major achievement in a program area that rarely sees increases of such magnitude.
  • National ALS Registry: $10 million – continued funding that continues support for the Registry at current levels.
  • National Institutes of Health (NIH): $41.084 billion in the House vs. $42.084 billion in the Senate

Here is the current status of fiscal year 2020 appropriations bills for these vital ALS research priorities:

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The full Senate must now pass a bill to fund the ALSRP, Registry and NIH. Once that happens, the House and Senate will come together in a conference committee to hash out any differences between their respective bills and then send it to the president for signature. 

As the largest philanthropic funder of ALS research in the world, The ALS Association is laser-focused on increasing federal investments in ALS research, collaborating with the federal researchers to maximize the impact of dollars, and ensuring that the research we fund complements public and private investments across the research continuum. 

The ALS Association spearheads annual campaigns to preserve and increase federal funding for ALSRP, the Registry and NIH. In our efforts, we: 1) devise and implement multi-faceted campaigns, 2) directly lobby Congress, 3) mobilize our ALS advocates, 39 chapters and ALS Clinics, and 3) collaborate with other ALS organizations. Here is more about how The ALS Association and advocates like you successfully convinced Congress to preserve and increase funding for ALS research priorities:

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