{"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":"relais-pour-la-vie-a-nashville-2","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/relay-for-life-in-nashville\/","title":{"rendered":"Relais pour la vie \u00e0 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>Par Chesnee Green<\/em>, le 21 septembre 2018, Nashville (Tennessee). \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>En 2015, Joe Lofaro a re\u00e7u un diagnostic de cette maladie extr\u00eamement rare et comprend l\u2019importance de sensibiliser le public \u00e0 l\u2019ECD. Alors qu\u2019il se pr\u00e9parait pour l\u2019\u00e9v\u00e9nement \u00ab Father Ryan Relay for Life \u00bb \u00e0 Nashville, dans le Tennessee, auquel il devait participer le 22 septembre, Joe a saisi l\u2019occasion d\u2019organiser une soir\u00e9e de sensibilisation \u00e0 l\u2019ECD la veille au soir.\u00a0 Cet \u00e9v\u00e9nement faisait suite \u00e0 la Semaine de sensibilisation \u00e0 l'ECD organis\u00e9e par l'ECDGA, qui s'est d\u00e9roul\u00e9e la deuxi\u00e8me semaine de septembre, et co\u00efncidait avec le mois de sensibilisation \u00e0 l'histiocytose, c\u00e9l\u00e9br\u00e9 tout au long du mois.<\/p>\n<p>En pr\u00e9sence de 12 de ses camarades de classe, Joe a organis\u00e9 un formidable d\u00eener de sensibilisation \u00e0 l'ECD, avec au programme des t-shirts de sensibilisation \u00e0 l'ECD, des informations, un moment de convivialit\u00e9, ainsi que la pr\u00e9sence d'un journaliste sp\u00e9cialis\u00e9 dans les affaires publiques venu relater l'\u00e9v\u00e9nement. Tout au long de la soir\u00e9e, la cagnotte a permis de r\u00e9colter plus de $150.\u00a0 Melinda Brown, elle-m\u00eame atteinte d\u2019ECD et amie tr\u00e8s proche, a \u00e9galement assist\u00e9 \u00e0 l\u2019\u00e9v\u00e9nement.<\/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\/fr\/?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\/fr\/?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\/fr\/?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, accompagn\u00e9 de 50 autres amis, membres de sa famille et habitants de la communaut\u00e9, tous v\u00eatus des t-shirts de l'\u00e9quipe \u00ab ECD Awareness \u00bb, a saisi cette occasion pour mener une importante campagne de sensibilisation en informant toutes les personnes int\u00e9ress\u00e9es par l'ECD.<\/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\/fr\/wp-json\/wp\/v2\/posts\/30074","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=30074"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/30074\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/3578"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=30074"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=30074"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=30074"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}