Bipartisan congressional effort calls for increased ALS research funding
Letter has been signed by 61 members of Congress
A bipartisan team of U.S. congressional legislators is calling for increased funding to support research seeking to better understand and develop new treatments for amyotrophic lateral sclerosis (ALS).
Congressman Jason Crow, a Democrat representing a district in Colorado, authored a letter to various congressional committees that has been signed by 61 bipartisan Members of Congress, according to a press release.
“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,” the letter states.
Funds sought for research efforts by CDC, NIH, others
The letter is requesting additional funding in several areas. First, it asks for $80 million for the ALS Research Program at the U.S. Department of Defense (DOD). The letter emphasizes that people who have served in the military are twice as likely as the general population to develop ALS, highlighting the importance of ALS research for service members and veterans.
“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,” the letter states. “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.”
Next, the letter calls on the U.S. Centers for Disease Control and Prevention (CDC) to fund efforts to understand the causes of ALS and develop strategies for preventing the disease. This includes increasing funding for prevention strategies focused on veterans and military personnel by $5 million relative to levels in fiscal year 2024, as well as $15 million to support the CDC’s National ALS Registry and Biorepository.
“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,” the letter states.
The congressional team is calling for more funding for ALS research by the National Institutes of Health (NIH) as well. Currently, the NIH allocates $143 million per year for ALS clinical research. The letter asks that this funding be increased to $180 million per year. The letter also asks that $75 million per year in funding be maintained to help fund expanded access programs to enable people with ALS who aren’t eligible for clinical trials to get access to promising investigational therapies.
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.
Finally the letter calls on Congress to fund existing ALS research programs at the U.S. Food and Drug Administration, including $25 million for a grant program that funds research into ALS and other rare neurological diseases.
“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,” the letter concludes.
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