ALS Association Moving to Press for ALS Research Money from Congress

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by Mary Chapman |

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Congress and ALS funding

As a new U.S. Congress prepares to start the annual process of determining funding for federal programs, the ALS Association is asking its advocacy network to press their legislators to expand support for research in amyotrophic lateral sclerosis (ALS).

“This year, the ALS Association will aggressively pursue new and increased investments in research to find treatments and a cure, slow symptom progression, reduce the number of new cases, and increase the length and quality of life for every American living with ALS,” the nonprofit organization wrote in a blog post.

Specifically, the ALS Association wants the 117th Congress to raise to at least $130 million money given to National Institutes of Health (NIH) investigations. Doing so would help to create a new generation of ALS neuroscientists, speed the discovery and development of therapy candidates, and increase the number of clinical studies in ALS, it stated.

The organization is also calling on lawmakers to raise to at least $60 million funding for the Defense Department’s ALS research program. This money helps to move preclinical research into human studies — a crucial step in treatment development.

Congress is also being lobbied to earmark at least $50 million for the U.S. Food and Drug Administration’s Orphan Products Grants Program. Funding here would support studies into rare diseases that might speed treatment development, promote novel trial designs, and help to open natural history investigations into how diseases like ALS develop and progress.

At least $10 million is wanted for the National ALS Registry, and the National ALS Biorepository that is part of this registry. Both programs, sponsored by the Centers for Disease Control and Prevention, help scientists to identify ALS risk factors and disease patterns, as well as potential clinical trial candidates, and to collect biological samples for use in research.

Congress is also being asked to set aside $1 million for a National Academy of Sciences study aimed at outlining what stakeholders and the federal government can do to end ALS.

“This appropriations funding will increase the number of ALS clinical trials to find treatments and cures as well as identify risk factors,” the ALS Association said in its post. “These investments must also be integrated with increased collaboration across agencies so that discoveries are translated into application. The National Academy of Sciences will provide a blueprint to achieve these goals.”

Previous efforts by the ALS community to press Congress for additional funds, and to protect projects already being supported, have proven worthwhile, the association said. It gave as example 2020’s  increased funding that raised support to $40 million for the Defense Department’s ALS research program, a doubling of its funding for a second consecutive year. NIH funding also rose to almost $43 billion— a $1.2 billion hike —in 2020, and the ALS registry was fully funded with $10 million.

“The successes we saw last year indicate Congress is paying attention to the ALS community and is motivated by its tenacity and unified voice on priority issues and funding opportunities,” the association stated.

“To build on our momentum, the ALS community must not slow down — we must double down. With your help securing this investment from Congress, we can drastically accelerate the fight against ALS, providing greater hope to every American family affected by ALS,” it concluded.