Priorities and recommendations to make ALS a livable disease emanating from the 2024 National Academies of Sciences, Engineering, and Medicine report Living with ALS

Details

• Alternative Title:
  Ann Neurol
• Personal Author:
  Howard, Ileana M. ; Babu, Suma ; Carter, Chelsey ; Sakowski, Stacey A. ; Kurent, Jerome E. ; Cudkowicz, Merit E. ; Feldman, Eva L.
• Description:
  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.
• Subjects:
  Amyotrophic Lateral Sclerosis Humans Quality Of Life United States
• Source:
  Ann Neurol. 96(6):1035-1039
• Pubmed ID:
  39390661
• Pubmed Central ID:
  PMC11563851
• Document Type:
  Journal Article
• Funding:
  R01 TS000327/TS/ATSDR CDC HHSUnited States/ ; OT2 NS136938/NS/NINDS NIH HHSUnited States/ ; U01 NS077179/NS/NINDS NIH HHSUnited States/ ; U01 NS136020/NS/NINDS NIH HHSUnited States/ ; Charles H. Abdalian, Jr. ALS Research Fund/ ; OT2 NS136939/NS/NINDS NIH HHSUnited States/ ; NeuroNetwork for Emerging Therapies/ ; R01 ES030049/ES/NIEHS NIH HHSUnited States/ ; R01TS000344/Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry/ ; American Academy of Neurology/ ; ALS One/ ; ALS Association/ ; UF1 NS131791/NS/NINDS NIH HHSUnited States/ ; R01TS000327/Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry/ ; 1U01NS136021-01/NH/NIH HHSUnited States/ ; 1U01NS136020-01/NH/NIH HHSUnited States/ ; R01NS127188/NH/NIH HHSUnited States/ ; R01ES030049/NH/NIH HHSUnited States/ ; Scott L. Pranger/ ; The Sean M. Healey & AMG Center for ALS/ ; 1U01NS077179-01/NH/NIH HHSUnited States/ ; Muscular Dystrophy Association/ ; U01 NS136021/NS/NINDS NIH HHSUnited States/ ; R01 NS127188/NS/NINDS NIH HHSUnited States/ ; The Neurological Clinical Research Institute/ ; UF1NS131791-01/NH/NIH HHSUnited States/ ; 1OT2NS136938-1/NH/NIH HHSUnited States/ ; R01 TS000344/TS/ATSDR CDC HHSUnited States/ ; ALS Finding a Cure/ ; OT2NS136939/NH/NIH HHSUnited States/
• Volume:
  96
• Issue:
  6
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha-512:6e90aed1ef87d0615a8ffe8c678865ff5129f02a5fa48f1289b5234ab5dc188d44fa1fb8c8f5ced48615ec0b1423e27cae924710fbeb22d4efbd001080333d45
• Download URL:
  https://stacks.cdc.gov/view/cdc/169998/cdc_169998_DS1.pdf
• File Type:
  [PDF - 350.05 KB ]