Increased Federal Funding to be Focus of August Advocacy Action Month


In August, ALS advocates across the country will be meeting with members of Congress in their home district offices, pressing for public policies that will make ALS livable while accelerating the search for new treatments and ways to cure the disease.

One of the primary asks advocates will be making of their representatives and senators is for increased federal spending for the fight against ALS, through a process known as appropriations.

Denise Bailin, director of congressional affairs at The ALS Association, discussed the appropriations process and the Association’s strategy for securing funding on a recent episode of Connecting ALS.

Last year we were very successful in securing $250 million for ALS research, and we should all be thankful and grateful and excited to see how much research that's going to support to get us to a cure."

This year, the Association is asking for more.

“Let's go for more because the need is still out there.”

Increased federal funding on ALS research is important to the drug ecosystem. The federal government spends more than $10 for every $1 The ALS Association funds. That means we need to fight to make sure the federal government expands funding on ALS research to find new treatments and a cure.


Through the annual appropriations process, Congress determines how much taxpayer money to spend on various government responsibilities – defense spending, education spending and, importantly, health care and scientific research.

It’s a complex process that begins with the President’s State of the Union address and ensuing budget proposal, and then shifts to the budgeting process in Congress. Appropriations committees and subcommittees in both the House and the Senate overseeing various spending areas develop recommended spending levels. Once those budget levels are approved by the appropriations committees, they move to the House and Senate for approval.

Advocates in front of capitol building

This year, the House has proposed drastic cuts to the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) to administer ALS research programs. With opposing funding priorities in the House and Senate, Congress will have to negotiate a final deal before the President signs off on the budget.

Out of the 12 appropriations bills that comprise the federal budget, ALS advocates focus on three: Labor, Health and Human Services, which provides the budget for the NIH; Defense, which provides funding for the Department of Defense ALS Research Program, and Agriculture, which provides funding for the FDA’s Rare Neurodegenerative Disease Grant Program.

This year, the Association is requesting Congress appropriate:

  • $150 million for the NIH;
  • $100 million to support the Act for ALS;
  • $80 million at the Defense Department, and
  • $15 million at the CDC.

To learn more about our federal legislative priorities, visit our website HERE.

To learn more about August Action Month and how you can get involved to help the ALS community, visit our website HERE.

CLICK HERE to listen to the full Connecting ALS podcast episode “Pressing for Increased Federal Funding for the Fight.” You can subscribe to Connecting ALS at

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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