{"id":30074,"date":"2024-12-31T12:01:46","date_gmt":"2024-12-31T18:01:46","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=30074"},"modified":"2025-10-02T10:02:08","modified_gmt":"2025-10-02T15:02:08","slug":"relay-for-life-a-nashville","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/it\/relay-for-life-in-nashville\/","title":{"rendered":"Relay for Life a Nashville"},"content":{"rendered":"<p><em>One of the biggest American Cancer Society events of the year hosted an Erdheim-Chester Disease team!<\/em><\/p>\n<p><em>Di Chesnee Green<\/em>, 21 settembre 2018, Nashville, TN. \u2013<\/p>\n<p>Erdheim-Chester Disease Global Alliance (ECDGA), a non-profit based in DeRidder LA, continually searches for a cure for Erdheim-Chester Disease (ECD).\u00a0 ECD is a non-Langerhans cell histiocytosis, a very rare blood cancer, that affects fewer than one thousand patients around the world.\u00a0 Patients with this disease often go misdiagnosed for many years. \u00a0Raising awareness is vital to finding the right diagnosis for such a rare disease.<\/p>\n<p>Nel 2015 a Joe Lofaro \u00e8 stata diagnosticata questa malattia estremamente rara e lui comprende l\u2019importanza di sensibilizzare l\u2019opinione pubblica sull\u2019ECD. Mentre si preparava per l\u2019evento \u201cFather Ryan Relay for Life\u201d a Nashville, nel Tennessee, a cui avrebbe partecipato il 22 settembre, Joe ha colto l\u2019occasione per organizzare un evento di sensibilizzazione sull\u2019ECD la sera prima.\u00a0 Questo evento faceva seguito alla Settimana di sensibilizzazione sull\u2019ECD organizzata dall\u2019ECDGA, tenutasi nella seconda settimana di settembre, e coincideva con il mese dedicato alla sensibilizzazione sull\u2019istiocitosi, che viene celebrato per tutto il mese.<\/p>\n<p>Alla presenza di 12 dei suoi compagni di classe, Joe ha organizzato una straordinaria cena di sensibilizzazione sull\u2019ECD, con magliette dedicate alla causa, materiale informativo, momenti di convivialit\u00e0 e la partecipazione di un giornalista di attualit\u00e0 incaricato di raccontare l\u2019iniziativa. Nel corso della serata, il barattolo delle donazioni ha raccolto oltre $150.\u00a0 All\u2019evento ha partecipato anche Melinda Brown, anch\u2019essa paziente affetta da ECD e cara amica.<\/p>\n<p>On Saturday, Joe along with 50 other friends, family, and community members, all wearing the ECD Awareness team shirts, took the opportunity to raise a great deal of awareness by informing all that where curious about ECD.\u00a0 Unfortunately, the day would be cut short by a late summer rain shower that took place from 5:00 until 10:00 PM.\u00a0 However, on top of spreading ECD awareness, Joe\u2019s team managed to raise $250 for the American Cancer Society, adding to the grand total of $203,000 for this year\u2019s Father Ryan event.\u00a0 At this time, Father Ryan\u2019s lifetime total contributions are over one million dollars!<\/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-30074 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\/it\/?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\/it\/?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\/it\/?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>","protected":false},"excerpt":{"rendered":"<p>Joe, insieme ad altri 50 amici, familiari e membri della comunit\u00e0, tutti con indosso le magliette del team \u201cECD Awareness\u201d, ha colto l\u2019occasione per sensibilizzare ampiamente il pubblico, fornendo informazioni a tutti coloro che erano interessati all\u2019ECD.<\/p>","protected":false},"author":20,"featured_media":3578,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[272],"tags":[],"class_list":["post-30074","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-voices-of-ecd"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/30074","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/comments?post=30074"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/30074\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media\/3578"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media?parent=30074"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/categories?post=30074"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/tags?post=30074"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}