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Review
. 2024 Dec;96(6):1035-1039.
doi: 10.1002/ana.27097. Epub 2024 Oct 10.

Priorities and Recommendations to Make ALS a Livable Disease Emanating from the 2024 National Academies of Sciences, Engineering, and Medicine Report Living with ALS

Ileana M Howard #  1   2 , Suma Babu #  3 , Chelsey Carter  4 , Stacey A Sakowski  5 , Jerome E Kurent  6 , Merit E Cudkowicz  3 , Eva L Feldman  5
Affiliations
Review

Priorities and Recommendations to Make ALS a Livable Disease Emanating from the 2024 National Academies of Sciences, Engineering, and Medicine Report Living with ALS

Ileana M Howard et al. Ann Neurol. 2024 Dec.

Abstract

Amyotrophic lateral sclerosis (ALS) is a relentless, fatal neurodegenerative disease. The progressive loss of voluntary muscle function, diagnostic delays, lack of effective treatments, and challenges accessing multidisciplinary care and resources have tremendous impact on quality of life. The congressionally directed ALS committee of the National Academies of Science, Engineering, and Medicine, in their 2024 report "Living with ALS," recommends critical actions for specific United States stakeholders to make ALS a livable disease over the next decade. This review summarizes the context and recommendations of the report. Advocacy efforts are critical to make these recommendations a reality for the ALS community. ANN NEUROL 2024;96:1035-1039.

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Conflict of interest statement

Potential Conflicts of Interest

S.B. reports research funding from Biogen, Novartis, Ionis Pharmaceuticals, OrphAI Therapeutics, Denali Therapeutics, and uniQure.

M.E.C. reports consulting fees from Denali Therapeutics, ITB-MED, and Calico and personal compensation from Transposon Therapeutics, Ono Pharmaceutical Co., InFlectis BioScience, QurAlis, Novartis, NeuroSense Therapeutics, Biogen, Locust Walk, Pasitnea, Roche, Denali Therapeutics, Immunity Pharma, RRD, Takeda Pharmaceuticals, Mitsubishi Tanabe Pharma Corporation, Arrowhead Pharmaceuticals, Servier Pharmaceuticals, Eledon Pharmaceuticals, Cytokinetics, and Regeneron Pharmaceuticals.

I.M.H., S.B., C.C., J.E.K., and E.L.F. served on the National Academies of Science, Engineering, and Medicine Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life committee.

S.A.S has no relevant conflicts to disclose.

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