Congressman Crow Leads Bipartisan Effort to Expand ALS Research, Protect National ALS Registry

WASHINGTON — Congressman Jason Crow (D-CO-06) is leading a bipartisan effort to support critical medical research funding for Americans living with Amyotrophic Lateral Sclerosis (ALS), a fatal neurodegenerative disease.

Crow’s letter, signed by 61 bipartisan Members of Congress, highlights the importance of expanding ALS research and the National ALS Registry and Biorepository in the Fiscal Year (FY) 2026 appropriations budget bills. 

His effort calls for an expansion of funding for the U.S. Department of Defense’s ALS Research Program to improve drug development and also calls for robust support for the U.S. Center for Disease Control and Prevention’s (CDC) efforts to develop a new new research initiative focused on ALS and veteran care. The letter requests an increase in funding to the National Institutes of Health (NIH) to provide treatment with investigational drugs to foster new approaches to ALS research, and calls for authorizing full funding for the FDA Neurodegenerative Disease Grant Program created through the ACT for ALS Act passed in the 117th Congress.

“You can make a meaningful difference to every American family living with ALS today and to those who will be diagnosed in the future by supporting research to find effective treatments and a cure, to optimize the treatments and technologies available today, and to prevent future cases,” the Members write.

The Members continue: “To achieve these goals and end ALS, Congress must increase federal funding for ALS research across multiple agencies.”

The letter calls for backing research to support people living with ALS and their families, improve patient’s quality of life and prevent future Americans from getting ALS.

ALS can affect anyone – and with no current cure and few treatments, an ALS diagnosis leaves individuals with a 2-5 year life expectancy. It is estimated that up to 20,000 Americans suffer from ALS at any given time. Veterans are twice as likely as civilians to be diagnosed with ALS.

This letter builds on Congressman Crow’s previous work to support ALS research and advocate for patients and families. Congressman Crow previously led a bipartisan effort to champion ALS research for active-duty servicemembers and veterans, and backed the elimination of a five-month waiting period on insurance benefits for ALS patients. He also introduced a resolution designating May as ALS Awareness Month, and co-launched the bipartisan ALS Caucus with his colleagues in the House.

A PDF of the letter can be found here, with full text appearing below:   

May 2, 2025

Dear Chairs Aderholt, Calvert, and Harris and Ranking Members DeLauro, McCollum, and Bishop: 

Thank you for your continued strong support of ALS (amyotrophic lateral sclerosis) research. Your support for ALS research is instrumental in speeding the development of new treatments and a cure for ALS at the Department of Defense’s (DOD) ALS Research Program (ALSRP), the National Institutes of Health (NIH), the Centers for Disease Control and Prevention’s (CDC) National ALS Registry and Biorepository, and the Food and Drug Administration’s (FDA) Rare Neurodegenerative Disease Grant Program. 

As you know, ALS is a fatal neurodegenerative disease that can affect anyone, at any time, and progressively destroys a person’s ability to control muscle movement. As the disease advances, people become trapped inside a body they can no longer control. Their minds, however, often remain sharp so that they are aware of their surroundings, the people in their lives, and what is happening to them. The average life expectancy for a person living with ALS is just 2-5 years after diagnosis. There is no cure and few treatments that delay but do not stop disease progression. Our veterans are twice as likely to develop ALS as civilians. 

You can make a meaningful difference to every American family living with ALS today and to those who will be diagnosed in the future by supporting research to find effective treatments and a cure, to optimize the treatments and technologies available today, and to prevent future cases. To achieve these goals and end ALS, Congress must increase federal funding for ALS research across multiple agencies. 

DEFENSE SUBCOMMITTEE 

Department of Defense ALS Research Program 

We request $80 million for the ALS Research Program (ALSRP). It is especially vital to active military members and veterans who are twice as likely to develop and die from ALS, regardless of the era they served. DOD’s ALSRP is unique. The program is well positioned to expand its portfolio into early-phase clinical trials to bridge the so-called “valley of death” in ALS drug development between promising preclinical research and human studies. These additional funds are vital to increase preclinical research and early phase ALS clinical trials that can accelerate the development of new treatments and a cure. We believe it continues to be important for the DOD to identify and research all diseases that may be related to service in the U.S. military, including ALS.

Report Language: The Committee recommends increasing funding to $80 million to maintain the pre-clinical research in the ALS Research Program (ALSRP) and expand the program to grant funds in support of clinical trials. We recognize military veterans are more likely to be diagnosed with ALS, regardless of the era they served. The ALSRP has a unique ability to fund clinical trials for new ALS treatments and cures with additional funding while making an impact in pre-clinical research. Since FY07, the ALSRP has funded 222 projects that has led to 5 new treatments currently being tested in clinical trials or in preclinical development. 

LABOR, HEALTH AND HUMAN SERVICES SUBCOMMITTEE 

National Institutes of Health (NIH)-ALS Research 

Currently NIH spends $143 million on ALS clinical research each year. We request an increase in funding to $180 million at NIH to increase ALS research that leads to measurable differences in the health of people living with ALS. We also request maintaining $75 million for Expanded Access Grants to provide treatment with investigational drugs for people with ALS who are not eligible for clinical trials and collect relevant data as authorized by the Accelerating Access to Critical Therapies (ACT) for ALS (P.L. 117-79). Lastly, we request full funding for Section 3 and 5 of that law at the Food and Drug Administration (FDA) to foster new approaches to research for ALS. 

Report Language: The Committee recommends increasing funding for extramural research to $180 million to reduce the burdens of people by ALS as quickly as possible. It is crucial for people living with ALS and people diagnosed with ALS in the future, that NIH dramatically grows its ALS research portfolio and the research workforce. This additional funding should focus not only on new drugs for ALS but also on ALS diagnosis protocols, enhancing the quality of care, and studying new ALS biomarkers. NIH ALS research can lead the country to measurable changes in the lives of people living with ALS. 

The Committee recommends funding at $75 million as authorized by the Accelerating Access to Critical Therapies (ACT) for ALS, (P.L. 117-79) Expanded Access Grants for the development of ALS research and treatments. Expanded Access Grants provide treatment with investigational drugs for people with ALS who are not eligible for clinical trials and collect relevant data. We recommend NINDS continue to prepare ALS clinics across the country to qualify as expanded access sites to ensure a broad geographic distribution of grants. Furthermore, after the review and awards of eligible applications under Section 2, the Committee recommends NIH apply any unused funds to programs authorized under ACT for ALS including Section 3 public-private research partnership and Section 5 Rare Neurodegenerative Disease Grant Program at FDA.

CDC National ALS Registry and Biorepository 

The Committee recommends a funding level of $15 million for the National ALS Registry and Biorepository at Centers for Disease Control and Prevention. This funding will ensure that critical research into risk factors and the prevention of ALS is supported, that biological samples are collected and made available to private and governmental researchers, and that people living with ALS are informed about new clinical trial opportunities. Most importantly, we urge the CDC to fund research and activities that will lead to the prevention of ALS, including funding translational research on ALS risk factors and risk reduction strategies. In addition, we recognize that active military personnel and veterans are at increased risk to develop ALS. We are directing the CDC to initiate new a research initiative with an additional $5 million over FY24 levels, to research causes and prevention strategies that will lower the incidence of ALS among active-duty personnel and veterans. 

Report Language: The Committee recommends a funding level of $15 million for the National ALS Registry and Biorepository at CDC to maintain the National ALS Registry and Biorepository. We urge the CDC to continue its investment in research to reduce the incidence of ALS through ALS prevention and risk mitigation strategies among civilians, active military personnel and veterans in the United States. Additionally, we urge the CDC to collaborate with the Departments of Defense and Veterans Affairs to provide a publicly available report on the incidence and prevalence of ALS among military veterans. This report, due 1-year after enactment, must include a strategy to develop and test risk reduction strategies that will lower the incidence of ALS among active-duty personnel and veterans.

AGRICULTURE SUBCOMMITTEE 

Food and Drug Administration’s (FDA) Rare Neurodegenerative Disease Grant Program-

The ACT for ALS Act established the FDA Rare Neurodegenerative Disease Grant Program for clinical grants ALS and other diseases. The FDA has already demonstrated admirable focus and speed in the projects it supported through partial funding of the ACT for ALS. Congress should provide the full authorized funding for this law and allocate $25 million for research that can further accelerate the approval of new therapies and cures for ALS and other neurodegenerative diseases.

Report Language: The Committee recommends $25 million as authorized in Accelerating Access to Critical Therapies (ACT) for ALS (P.L. 117-79) to fund research grants in Section 5 of the law, the FDA Rare Neurodegenerative Disease Grant Program. We recognize the importance of FDA’s Rare Neurodegenerative Disease Grant Program research into regulatory science tools to expedite the development and approval of new drugs and devices. The Committee also directs the FDA to fund Section 3 of ACT for ALS, the HHS PublicPrivate Partnership for Rare Neurodegenerative Diseases to foster a network of research with funds also from HHS and NIH. 

CONCLUSION 

We appreciate your consideration of our FY2026 appropriations requests for ALS research. People living with ALS urgently need these investments in research to eradicate the disease. We need new treatments and cures, and more preclinical research projects for successful clinical trials. These endeavors will help people living with ALS to live longer, improve quality of life for people living with ALS and their families, prevent loved ones from getting ALS in the future, and allow Americans to live longer in a world without ALS.

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