ALS groups seek to help shape 2025 Congressional funding priorities

Some 20 nonprofits sign letter to US legislators seeking greater support

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by Mary Chapman |

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Some 20 U.S. organizations with a focus on amyotrophic lateral sclerosis (ALS) have put their names on a letter that seeks to help shape Congressional funding priorities for the federal legislative fiscal year 2025 to better serve the ALS community.

The correspondence from the nonprofits, sent last week, was addressed to two members each of the U.S. House and Senate Committees on Appropriations in Washington, D.C. Specifically, the letter was written to Kay Granger of Texas and Rosa DeLauro of Connecticut, both in the U.S. House of Representatives, and Patty Murray of Washington state and Susan Collins of Maine, two U.S. senators.

In the letter, the groups ask for greater Congressional funding support for clinical and preclinical research efforts and programs. It was published by the organization I AM ALS, a patient-led community and one of the letter’s signatories.

“On behalf of the ALS community, the undersigned organizations would like to express our appreciation for the support you have provided to help improve outcomes for those living with ALS. … Looking forward we would like to reiterate our funding request from last year and ask that Congress increase funding for the entire ALS research ecosystem,” the letter states.

“It is imperative that increased support be provided to launch more clinical trials that speed access to promising research and innovative treatments for people living with ALS today and all those who unfortunately will be diagnosed with this terrible disease in the future,” the signers then state.

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Letter to legislators targets 5 Congressional funding priorities

The fiscal year for 2025, known as FY2025, will run from Sept. 29, 2024 through Sept. 27, 2025. The proposed budget already is a working document.

Murray serves as chair of the Senate Committee on Appropriations, while Collins serves as vice-chair. For the House committee, Granger is the chair and DeLauro a ranking member.

The letter focuses on five specific funding areas for which the organizations are urging Congress to take action:

  • The groups want full Congressional funding, at $100 million, for the Accelerating Access to Critical Therapies (ACT) for ALS Act. Known simply as ACT for ALS, it was created in 2021 to support critical research into neurodegenerative disorders, and to give patients early access to promising experimental treatments.
  • Increased funding, to $80 million, is sought for the ALS Congressionally Directed Medical Research Programs (CDMRP) at the U.S. Department of Defense. In the U.S., military veterans are twice as likely to develop ALS, the letter points out.
  • Overall increased National Institutes of Health funding is needed for investigations outside ACT for ALS, the groups say. These advocates want a funding hike to provide $160 million to support preclinical and clinical research for ALS.
  • The organizations seek to ensure that the Advanced Research Projects Agency for Health (ARPA-H) continues to prioritize ALS. To that end, the groups seek an investment of $30 million to support research and clinical studies. The overarching goal, the advocates say, is to enable innovative trial designs and therapies that can improve patients’ health as quickly as possible.
  • Increased funding, from $10 million to $15 million, also is sought for the Centers for Disease Control and Prevention. Such funding would help to maintain the National ALS Biorepository, part of the National ALS Registry, and would support studies into disease causes and prevention approaches that can reduce the incidence of ALS.

“These programs are critical to providing hope for those living with ALS and rare neurodegenerative diseases today,” the letter states. “They are also essential to the pursuit of new treatments and cures for those living with these diseases today and those diagnosed in the future.”

In addition to I AM ALS, groups that signed the letter include the Muscular Dystrophy Association, The ALS Association, the Les Turner ALS Foundation, and Target ALS. Signors also include ALS Arizona, ALS Network, ALS of Nevada, ALS United Connecticut, ALS United Georgia, ALS United Greater New York, and ALS United Greater Chicago.

Also signing the letter were ALS New Mexico, ALS United Mid-Atlantic, ALS United North Carolina, ALS United Ohio, ALS United Rhode Island, ALS United Rocky Mountain, ALS United Orange County, and ALS Northwest.

“We urge Congress to act expeditiously on these requests to provide immediate support to the entire ALS community and beyond,” the letter concludes.