{"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-in-nashville","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nl\/relay-for-life-in-nashville\/","title":{"rendered":"Relay for Life in 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>Door Chesnee Green<\/em>, 21 september 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>In 2015 werd bij Joe Lofaro deze uiterst zeldzame ziekte vastgesteld en hij beseft hoe belangrijk het is om meer bekendheid te geven aan ECD. Ter voorbereiding op het \u2018Father Ryan Relay for Life\u2019-evenement in Nashville, Tennessee, waaraan hij op 22 september zou deelnemen, maakte Joe van de gelegenheid gebruik om de avond ervoor een bewustmakingsevenement rond ECD te organiseren.\u00a0 Dit evenement volgde op de ECD-bewustmakingsweek die door de ECDGA werd georganiseerd in de tweede week van september, en viel samen met de bewustmakingsmaand voor histiocytose, die de hele maand in het teken staat van deze aandoening.<\/p>\n<p>In aanwezigheid van 12 klasgenoten organiseerde Joe een geweldig ECD-bewustmakingsdiner, met onder meer ECD-bewustmakingsshirts, voorlichting, gezellig samenzijn en een verslaggever van de afdeling publieke zaken die het verhaal kwam delen. Gedurende de avond werd er meer dan $150 in de donatiepot ingezameld.\u00a0 Melinda Brown, die zelf ook een ECD-pati\u00ebnt is en een zeer goede vriendin van hem, was eveneens bij het evenement aanwezig.<\/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\/nl\/?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\/nl\/?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\/nl\/?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 maakte samen met 50 andere vrienden, familieleden en leden van de gemeenschap, die allemaal de shirts van het ECD Awareness-team droegen, van de gelegenheid gebruik om veel aandacht voor het onderwerp te genereren door iedereen die nieuwsgierig was naar ECD hierover te informeren.<\/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\/nl\/wp-json\/wp\/v2\/posts\/30074","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/comments?post=30074"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/30074\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media\/3578"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media?parent=30074"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/categories?post=30074"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/tags?post=30074"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}