{"id":66841,"date":"2024-12-31T12:01:46","date_gmt":"2024-12-31T18:01:46","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/stafett-for-livet-i-nashville\/"},"modified":"2025-10-02T10:02:55","modified_gmt":"2025-10-02T15:02:55","slug":"stafett-for-livet-i-nashville","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/no\/stafett-for-livet-i-nashville\/","title":{"rendered":"Stafett for livet i Nashville"},"content":{"rendered":"<p><em>Et av \u00e5rets st\u00f8rste American Cancer Society-arrangementer hadde et Erdheim-Chester Disease-team!<\/em><\/p>\n<p><em>Av Chesnee Green<\/em>, 21. september 2018, Nashville TN. &#8211;<\/p>\n<p>Erdheim-Chester Disease Global Alliance (ECDGA), en ideell organisasjon med base i DeRidder LA, arbeider kontinuerlig for \u00e5 finne en kur mot Erdheim-Chester Disease (ECD). ECD er en ikke-Langerhans-cellehistiocytose, en sv\u00e6rt sjelden blodkreftsykdom som rammer f\u00e6rre enn tusen pasienter over hele verden. Pasienter med denne sykdommen blir ofte feildiagnostisert i mange \u00e5r. \u00d8kt bevissthet er avgj\u00f8rende for \u00e5 finne den riktige diagnosen for en s\u00e5 sjelden sykdom.   <\/p>\n<p>I 2015 fikk Joe Lofaro diagnosen denne ekstremt sjeldne sykdommen, og han forst\u00e5r hvor viktig det er \u00e5 \u00f8ke bevisstheten rundt ECD. I forbindelse med forberedelsene til Father Ryan Relay for Life-arrangementet i Nashville, TN, som han skulle delta p\u00e5 22. september, benyttet Joe anledningen til \u00e5 arrangere et ECD-bevissthetsarrangement kvelden f\u00f8r. Dette arrangementet skulle v\u00e6re i etterkant av ECD Awareness Week i regi av ECDGA, som arrangeres den andre uken i september, og sammenfalle med histiocytosem\u00e5neden, som feires hele m\u00e5neden.  <\/p>\n<p>Med 12 av klassekameratene til stede holdt Joe en fantastisk middag for \u00e5 \u00f8ke bevisstheten rundt ECD, med ECD Awareness-skjorter, informasjon, fellesskap og en reporter som delte historien. I l\u00f8pet av kvelden samlet donasjonskrukken inn over 150 dollar. Melinda Brown, som ogs\u00e5 er ECD-pasient og en sv\u00e6rt n\u00e6r venn, deltok ogs\u00e5 p\u00e5 arrangementet.  <\/p>\n<p>P\u00e5 l\u00f8rdag benyttet Joe sammen med 50 andre venner, familiemedlemmer og samfunnsmedlemmer, alle if\u00f8rt ECD Awareness-teamets skjorter, anledningen til \u00e5 \u00f8ke bevisstheten ved \u00e5 informere alle som var nysgjerrige p\u00e5 ECD. Dessverre ble dagen avbrutt av en regnskur p\u00e5 sensommeren, som varte fra kl. 17.00 til 22.00. I tillegg til \u00e5 spre kunnskap om ECD, klarte Joes team \u00e5 samle inn 250 dollar til American Cancer Society, noe som bidro til at \u00e5rets Father Ryan-arrangement kom opp i 203 000 dollar. P\u00e5 dette tidspunktet har fader Ryan samlet inn over \u00e9n million dollar i l\u00f8pet av sitt liv!   <\/p>\n\n\t\t<style>\n\t\t\t#gallery-1 {\n\t\t\t\tmargin: auto;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-item {\n\t\t\t\tfloat: left;\n\t\t\t\tmargin-top: 10px;\n\t\t\t\ttext-align: center;\n\t\t\t\twidth: 33%;\n\t\t\t}\n\t\t\t#gallery-1 img {\n\t\t\t\tborder: 2px solid #cfcfcf;\n\t\t\t}\n\t\t\t#gallery-1 .gallery-caption {\n\t\t\t\tmargin-left: 0;\n\t\t\t}\n\t\t\t\/* see gallery_shortcode() in wp-includes\/media.php *\/\n\t\t<\/style>\n\t\t<div id='gallery-1' class='gallery galleryid-66841 gallery-columns-3 gallery-size-full'><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/www.erdheim-chester.org\/no\/?attachment_id=3581'><img loading=\"lazy\" decoding=\"async\" width=\"960\" height=\"720\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1006.jpg\" class=\"attachment-full size-full\" alt=\"\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1006.jpg 960w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1006-300x225.jpg 300w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1006-768x576.jpg 768w\" sizes=\"(max-width: 960px) 100vw, 960px\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/www.erdheim-chester.org\/no\/?attachment_id=3579'><img loading=\"lazy\" decoding=\"async\" width=\"960\" height=\"720\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1002.jpg\" class=\"attachment-full size-full\" alt=\"\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1002.jpg 960w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1002-300x225.jpg 300w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1002-768x576.jpg 768w\" sizes=\"(max-width: 960px) 100vw, 960px\" \/><\/a>\n\t\t\t<\/dt><\/dl><dl class='gallery-item'>\n\t\t\t<dt class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/www.erdheim-chester.org\/no\/?attachment_id=3580'><img loading=\"lazy\" decoding=\"async\" width=\"960\" height=\"720\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1004.jpg\" class=\"attachment-full size-full\" alt=\"\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1004.jpg 960w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1004-300x225.jpg 300w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/10\/IMG_1004-768x576.jpg 768w\" sizes=\"(max-width: 960px) 100vw, 960px\" \/><\/a>\n\t\t\t<\/dt><\/dl><br style=\"clear: both\" \/>\n\t\t<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Joe og 50 andre venner, familiemedlemmer og medlemmer av lokalsamfunnet, alle if\u00f8rt ECD Awareness team-skjorter, benyttet anledningen til \u00e5 \u00f8ke bevisstheten ved \u00e5 informere alle som var nysgjerrige p\u00e5 ECD.<\/p>\n","protected":false},"author":20,"featured_media":103796,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[2141],"tags":[],"class_list":["post-66841","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-nyheter"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/66841","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/comments?post=66841"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/66841\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/103796"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=66841"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/categories?post=66841"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/tags?post=66841"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}