{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T17:01:10Z","timestamp":1791392470349,"version":"4.3.3"},"reference-count":21,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T00:00:00Z","timestamp":1788739200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,9,7]],"date-time":"2026-09-07T00:00:00Z","timestamp":1788739200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2026,11]]},"abstract":"ABSTRACT<\/jats:title>\n \n Introduction\/Aims<\/jats:title>\n People living with amyotrophic lateral sclerosis (ALS; pALS) have extensive care needs, from wheelchairs to feeding tubes to caregiving support. The financial impact of these needs on pALS and their caregivers (cALS) has not been fully explored. We aimed to explore the types of expenses for which pALS and cALS crowdfund, and the financial circumstances that lead them to resort to crowdfunding.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n \n We randomly selected 320\n ALS<\/jats:styled-content>\n \u2010related crowdfunding campaigns posted on the\n GoFundMe<\/jats:styled-content>\n platform from 2010\u20132020. We conducted a summative content analysis to categorize the expenses for which campaigns requested money and descriptions of financial burden.\n <\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n We included 266 campaigns. Most campaigns were written by people who were not the\n pALS<\/jats:styled-content>\n or\n cALS<\/jats:styled-content>\n , such as children or coworkers (85.3%). Most campaigns fundraised for medication and treatment costs (21.4%), equipment (25.2%), accessibility needs for home (24.0%), and transportation (19.5%), and in\u2010home caregiving services (18%). Multiple campaigns (22.9%) requested assistance with nonmedical expenses ranging from rent and utilities to personal travel and hobby goals. Many campaign writers (47.7%) described financial burden related to the\n pALS<\/jats:styled-content>\n ' diagnosis, including medical debt (4.5%) and job loss of the\n pALS<\/jats:styled-content>\n (30.5%) and\/or\n cALS<\/jats:styled-content>\n (6.8%).\n <\/jats:p>\n <\/jats:sec>\n \n Discussion<\/jats:title>\n \n Our analysis of\n ALS<\/jats:styled-content>\n \u2010related crowdfunding campaigns highlights the breadth of medical and nonmedical care needs and quality of life goals for which people request additional financial support throughout the disease course. These findings provide important insights for\n ALS<\/jats:styled-content>\n care teams into the expenses of\n pALS<\/jats:styled-content>\n .\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1002\/mus.70395","type":"journal-article","created":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T05:45:09Z","timestamp":1788846309000},"page":"1415-1420","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Online Crowdfunding Campaigns for People Living With\n ALS<\/scp>\n Demonstrate Financial Burden and Unmet Needs"],"prefix":"10.1002","volume":"74","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9596-9591","authenticated-orcid":false,"given":"Astrid","family":"Grouls","sequence":"first","affiliation":[{"name":"Baylor College of Medicine Houston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8218-519X","authenticated-orcid":false,"given":"Peter A.","family":"Ubel","sequence":"additional","affiliation":[{"name":"Duke University Durham North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-4426-8146","authenticated-orcid":false,"given":"Minh","family":"Nguyen","sequence":"additional","affiliation":[{"name":"Baylor College of Medicine Houston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3428-3064","authenticated-orcid":false,"given":"Nikhita","family":"Pathapati","sequence":"additional","affiliation":[{"name":"Baylor College of Medicine Houston Texas USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2899-2470","authenticated-orcid":false,"given":"Steven","family":"Doerstling","sequence":"additional","affiliation":[{"name":"Stanford University School of Medicine Stanford California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1611-3846","authenticated-orcid":false,"given":"Caroline E.","family":"Sloan","sequence":"additional","affiliation":[{"name":"Duke University Durham North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,7]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2023.2165947"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2020.1760889"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/mus.23942"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2017.1363242"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2014.932382"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/21678421.2024.2448536"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1212\/wnl.56.6.753"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.3109\/21678421.2014.951946"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2023.2235"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.7326\/M23\u20100540"},{"key":"e_1_2_12_12_1","unstructured":"M.Morley M.Aurora K.Gustafson et\u00a0al. \u201cMedicare Expenditures in the First Year of Amyotrophic Lateral Sclerosis Diagnosis \u201d(2025) accessed October 29 2025 https:\/\/www.ajmc.com\/view\/medicare\u2010expenditures\u2010in\u2010the\u2010first\u2010year\u2010of\u2010amyotrophic\u2010lateral\u2010sclerosis\u2010diagnosis."},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2025.09.2708"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10198\u2010021\u201001328\u20107"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000007838"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2018.10264"},{"key":"e_1_2_12_17_1","unstructured":"Anonymous \u201cSSA \u2010 POMS: DI 11036.001 \u2010 Amyotrophic Lateral Sclerosis \u2013 5\u2010Month and 24\u2010Month Waiting Periods Waived \u2013 Field Office \u2010 02\/21\/2025 \u201d(2025) accessed October 11 2025 https:\/\/secure.ssa.gov\/poms.nsf\/lnx\/0411036001."},{"key":"e_1_2_12_18_1","unstructured":"S.Walker \u201cVA Secretary Establishes ALS as a Presumptive Compensable Illness \u201d(2008) accessed October 11 2025 https:\/\/news.va.gov\/press\u2010room\/va\u2010secretary\u2010establishes\u2010als\u2010as\u2010a\u2010presumptive\u2010compensable\u2010illness\/."},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamainternmed.2019.3330"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0226686"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1177\/1363459320912808"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.26946"}],"container-title":["Muscle & Nerve"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.70395","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/mus.70395","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/mus.70395","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T16:43:11Z","timestamp":1791391391000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/mus.70395"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,7]]},"references-count":21,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2026,11]]}},"alternative-id":["10.1002\/mus.70395"],"URL":"https:\/\/doi.org\/10.1002\/mus.70395","archive":["Portico"],"relation":{},"ISSN":["0148-639X","1097-4598"],"issn-type":[{"value":"0148-639X","type":"print"},{"value":"1097-4598","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,7]]},"assertion":[{"value":"2026-02-24","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication 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