{"id":94209,"date":"2025-09-10T19:10:50","date_gmt":"2025-09-11T00:10:50","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=94209"},"modified":"2025-09-10T19:20:41","modified_gmt":"2025-09-11T00:20:41","slug":"%e6%9d%a5%e8%ae%a4%e8%af%86%e4%b8%80%e4%b8%8b%e4%bc%8a%e8%bf%aa%e4%b8%9d%e5%92%8c%e8%bf%88%e5%85%8b%c2%b7%e6%b2%83%e7%89%b9%e6%96%af%e5%a4%ab%e5%a6%87%ef%bc%8c%e4%bb%96%e4%bb%ac%e6%ad%a3%e9%80%9a","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/meet-edith-and-mike-watters-fighting-for-hope-one-fundraiser-at-a-time\/","title":{"rendered":"\u8ba4\u8bc6\u4f0a\u8fea\u4e1d\u548c\u8fc8\u514b\u00b7\u6c83\u7279\u65af\uff1a\u4e00\u6b21\u53c8\u4e00\u6b21\u5730\u4e3e\u529e\u7b79\u6b3e\u6d3b\u52a8\uff0c\u4e3a\u5e0c\u671b\u800c\u594b\u6597"},"content":{"rendered":"<p>\u8fd9\u4e2a <strong>\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5ba3\u4f20\u5468<\/strong>, \uff0c\u6211\u4eec\u5f88\u8363\u5e78\u5411\u60a8\u4ecb\u7ecd <strong>\u4f0a\u8fea\u4e1d\u548c\u8fc8\u514b\u00b7\u6c83\u7279\u65af<\/strong>, \uff0c\u8fd9\u5bf9\u975e\u51e1\u7684\u592b\u5987\uff0c\u4ed6\u4eec\u7684\u7ecf\u5386\u4f53\u73b0\u4e86\u6211\u4eec\u793e\u533a\u7684\u52c7\u6c14\u3001\u97e7\u6027\u548c\u521b\u9020\u529b\u3002.<\/p>\n<p>\u4f0a\u8fea\u4e1d\u548c\u2026\u2026\u4f4f\u5728\u4e00\u8d77 <strong>\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09<\/strong>, \uff0c\u8fd9\u662f\u4e00\u79cd\u6781\u5176\u7f55\u89c1\u4e14\u5e38\u88ab\u8bef\u89e3\u7684\u75be\u75c5\u3002\u5979\u7684\u4e08\u592b\u517c\u62a4\u7406\u5458\u8fc8\u514b\u4e00\u76f4\u966a\u4f34\u5728\u5979\u8eab\u8fb9\uff0c\u4e0e\u5979\u5171\u540c\u8d70\u8fc7\u6bcf\u4e00\u6b65\u3002\u4ed6\u4eec\u4e0d\u4ec5\u4ece\u5f7c\u6b64\u8eab\u4e0a\u6c72\u53d6\u529b\u91cf\uff0c\u66f4\u4ece\u5e0c\u671b\u4e3a\u5176\u4ed6\u60a3\u6709ECD\u7684\u60a3\u8005\u5e26\u6765\u6539\u53d8\u7684\u613f\u671b\u4e2d\u83b7\u5f97\u4e86\u529b\u91cf\u3002.<\/p>\n<p>\u5728\u4ee5\u4e0b\u89c6\u9891\u4e2d\uff0c\u4f0a\u8fea\u4e1d\u548c\u8fc8\u514b\u5206\u4eab\u4e86\u4ed6\u4eec\u7684\u6545\u4e8b\uff0c\u5e76\u91cd\u70b9\u4ecb\u7ecd\u4e86\u4ed6\u4eec\u5bf9ECD\u5168\u7403\u8054\u76df\u6240\u4f5c\u7684\u4e00\u9879\u6700\u91cd\u8981\u8d21\u732e\uff1a\u4ed6\u4eec\u7684 <strong>\u5e74\u5ea6\u201c\u8461\u8404\u9152\u751f\u5b58\u8005\u201d\u7b79\u6b3e\u6d3b\u52a8<\/strong>. \u6bcf\u5e74\uff0c\u8fd9\u9879\u5145\u6ee1\u4e50\u8da3\u4e0e\u6d3b\u529b\u7684\u6d3b\u52a8\u90fd\u80fd\u5c06\u4eba\u4eec\u51dd\u805a\u5728\u4e00\u8d77\uff0c\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\uff0c\u800c\u4e14\u2014\u2014\u6700\u91cd\u8981\u7684\u662f\u2014\u2014\u7b79\u96c6\u5173\u952e\u8d44\u91d1\uff0c\u7528\u4e8e\u63a8\u52a8\u5168\u7403\u8303\u56f4\u5185\u7684\u7814\u7a76\uff0c\u5e76\u4e3a\u60a3\u8005\u53ca\u5176\u5bb6\u5c5e\u63d0\u4f9b\u652f\u6301\u3002.<\/p>\n<p><iframe loading=\"lazy\" title=\"\u8ba4\u8bc6\u4f0a\u8fea\u4e1d\u548c\u8fc8\u514b\u00b7\u6c83\u7279\u65af\uff1a\u4e00\u6b21\u53c8\u4e00\u6b21\u5730\u4e3e\u529e\u7b79\u6b3e\u6d3b\u52a8\uff0c\u4e3a\u5e0c\u671b\u800c\u594b\u6597\" width=\"1080\" height=\"608\" src=\"https:\/\/www.youtube.com\/embed\/eb2StlpaT6Y?feature=oembed\"  allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p><strong>\u7b79\u6b3e\u6d3b\u52a8\u4e3a\u4f55\u91cd\u8981<\/strong><\/p>\n<p>Every dollar raised goes directly toward advancing research, improving patient resources, and strengthening our global community. For a rare disease like ECD, fundraisers are not just events\u2014they are lifelines.<\/p>\n<p>\u74e6\u7279\u65af\u4e00\u5bb6\u8ba9\u6211\u4eec\u610f\u8bc6\u5230\uff0c\u7b79\u6b3e\u6d3b\u52a8\u53ef\u4ee5\u6709\u591a\u79cd\u5f62\u5f0f\uff1a\u4ece\u8461\u8404\u9152\u62bd\u5956\u548c\u70d8\u7119\u4e49\u5356\uff0c\u5230\u793e\u533a\u5065\u8d70\u3001\u77e5\u8bc6\u95ee\u7b54\u4e4b\u591c\u548c\u7ebf\u4e0a\u6311\u6218\u3002\u5173\u952e\u5728\u4e8e\u521b\u9020\u529b\u3001\u70ed\u60c5\uff0c\u4ee5\u53ca\u76f8\u4fe1\u5fae\u5c0f\u7684\u884c\u52a8\u4e5f\u80fd\u5e26\u6765\u5de8\u5927\u7684\u6539\u53d8\u3002.<\/p>\n<p><strong>\u60a8\u53ef\u4ee5\u5982\u4f55\u63d0\u4f9b\u5e2e\u52a9<\/strong><\/p>\n<p>\u6211\u4eec\u975e\u5e38\u5e0c\u671b\u770b\u5230\u66f4\u591a\u53d7\u4f0a\u8fea\u4e1d\u548c\u8fc8\u514b\u7684\u5949\u732e\u7cbe\u795e\u542f\u53d1\u7684\u7b79\u6b3e\u6d3b\u52a8\uff01\u5982\u679c\u60a8\u6b63\u5728\u5bfb\u627e\u53c2\u4e0e\u7684\u65b9\u5f0f\uff1a<\/p>\n<ul>\n<li><strong>\u4e3e\u529e\u81ea\u5df1\u7684\u7b79\u6b3e\u6d3b\u52a8<\/strong>\u2014\u2014\u65e0\u8bba\u5927\u5c0f\uff0c\u6bcf\u4e00\u4efd\u52aa\u529b\u90fd\u4f1a\u4ea7\u751f\u5f71\u54cd\u3002.<\/li>\n<li><strong>\u53d1\u6325\u521b\u610f<\/strong>\u2014\u2014\u60f3\u60f3\u4f60\u7684\u670b\u53cb\u3001\u5bb6\u4eba\u6216\u793e\u533a\u4f1a\u559c\u6b22\u4ec0\u4e48\u3002.<\/li>\n<li><strong>\u5206\u4eab\u60a8\u7684\u60f3\u6cd5<\/strong> \u52a0\u5165\u6211\u4eec\u5427\uff01\u60a8\u7684\u6d3b\u52a8\u53ef\u80fd\u4f1a\u6fc0\u52b1\u5176\u4ed6\u4eba\u6548\u4eff\u3002.<\/li>\n<\/ul>\n<p>\u53ea\u8981\u6211\u4eec\u9f50\u5fc3\u534f\u529b\uff0c\u5c31\u80fd\u4fdd\u6301\u8fd9\u4e00\u52bf\u5934\uff0c\u786e\u4fdd\u6ca1\u6709\u4e00\u4f4d\u60a3\u8005\u72ec\u81ea\u9762\u5bf9\u65e9\u4ea7\u3002.<\/p>\n<p>\u8bf7\u89c2\u770b\u4f0a\u8fea\u4e1d\u548c\u8fc8\u514b\u7684\u89c6\u9891\uff0c\u7136\u540e\u544a\u8bc9\u6211\u4eec\uff1a <em>\u4f60\u6709\u4ec0\u4e48\u7b79\u6b3e\u521b\u610f\u5417\uff1f<\/em> \u8ba9\u6211\u4eec\u7ee7\u7eed\u64ad\u6492\u5e0c\u671b\u2014\u2014\u4e00\u6b21\u7b79\u6b3e\u6d3b\u52a8\uff0c\u4e00\u70b9\u4e00\u6ef4\u5730\u79ef\u7d2f\u3002.<\/p>","protected":false},"excerpt":{"rendered":"<p>This Erdheim-Chester Disease Awareness Week, we\u2019re honored to introduce you to Edith and Mike Watters, a remarkable couple whose journey reflects the courage, resilience, and creativity of our community. Edith [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":94258,"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":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[3190,375,387,4667,4666],"class_list":["post-94209","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-ecd","tag-ecdawareness","tag-ecdga","tag-fundraisingforhope","tag-winesurvivor"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/94209","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/comments?post=94209"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/94209\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/94258"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=94209"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=94209"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=94209"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}