{"id":3502,"date":"2014-07-30T22:47:56","date_gmt":"2014-07-30T22:47:56","guid":{"rendered":"https:\/\/lpfch.org\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/"},"modified":"2024-09-10T22:21:19","modified_gmt":"2024-09-10T22:21:19","slug":"heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder","status":"publish","type":"post","link":"https:\/\/lpfch.org\/ko\/impact-stories\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/","title":{"rendered":"'Heal EB'\uc640 \uc5d0\ub514\uc640 \uc9c8 \ubca0\ub354\ub294 \uc0dd\uba85\uc744 \uc704\ud611\ud558\ub294 \ud53c\ubd80 \uc9c8\ud658\uc744 \uc553\uace0 \uc788\ub294 \uc5b4\ub9b0\uc774\ub4e4\uc758 \uce58\ub8cc\ube44 \uc9c0\uc6d0\uc5d0 \ub098\uc130\uc2b5\ub2c8\ub2e4."},"content":{"rendered":"

\ud76c\uadc0\ud558\uace0 \uc0dd\uba85\uc744 \uc704\ud611\ud558\ub294 \uc720\uc804\uc131 \ud53c\ubd80 \uc9c8\ud658\uc778 \ud45c\ud53c\uc218\ud3ec\uc99d(EB) \uce58\ub8cc\ubc95 \uac1c\ubc1c\uc744 \ud5a5\ud55c \ub610 \ub2e4\ub978 \ubc1c\uac78\uc74c\uc73c\ub85c, \ub0a8\ubd80 \uce98\ub9ac\ud3ec\ub2c8\uc544\uc5d0 \uc704\uce58\ud55c \ube44\uc601\ub9ac \ub2e8\uccb4\uc778 Heal EB(www.healeb.org)\ub294 \uc2a4\ud0e0\ud37c\ub4dc \ub300\ud559\uad50 \uc758\uacfc\ub300\ud559 \ud53c\ubd80\uacfc \ubc0f \uc18c\uc544\uacfc \uba85\uc608\uad50\uc218\uc778 \uc54c\ud504\ub808\ub4dc \ub808\uc778 \ubc15\uc0ac\uc758 \uc5f0\uad6c\ub97c \uc9c0\uc6d0\ud558\uae30 \uc704\ud574 $50,000\uc744 \uae30\ubd80\ud588\uc2b5\ub2c8\ub2e4. \ub808\uc778 \ubc15\uc0ac\ub294 EB \ud658\uc790\uc758 \ud53c\ubd80\ub97c \ud3c9\uac00\ud558\uace0 \ud53c\ubd80 \uc0dd\uac80\uc758 \ud544\uc694\uc131\uc744 \uc904\uc774\ub294 \uc0c8\ub85c\uc6b4 \uae30\uc220 \uac1c\ubc1c\uc744 \uc704\ud55c \uc784\uc0c1 \uc2dc\ud5d8\uc744 \uc8fc\ub3c4\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4. \uadf8\ub294 \ub610\ud55c \uc774\ub7ec\ud55c \uc804\ubb38 \uc9c0\uc2dd\uc744 \uac16\ucd98 \ubbf8\uad6d \ub0b4 \uba87 \uc548 \ub418\ub294 \ubcd1\uc6d0 \uc911 \ud558\ub098\uc778 \uc2a4\ud0e0\ud37c\ub4dc \ub8e8\uc2e4 \ud328\ucee4\ub4dc \uc5b4\ub9b0\uc774 \ubcd1\uc6d0\uc5d0\uc11c EB \ud658\uc790\ub97c \uc9c4\ub8cc\ud558\uace0 \uc788\uc2b5\ub2c8\ub2e4.<\/span><\/p>\n

\ud604\uc7ac \uc9c4\ud589 \uc911\uc778 \uc784\uc0c1\uc2dc\ud5d8\uc5d0\ub294 EB \ud658\uc790\uc758 \uc0c1\ucc98\uc5d0 \uc774\uc2dd\ud560 \uc218 \uc788\ub294 \uc0c8\ub85c\uc6b4 \ud53c\ubd80\ub97c "\uc131\uc7a5"\uc2dc\ud0a4\uae30 \uc704\ud574 \uc904\uae30\uc138\ud3ec\ub97c \uc0ac\uc6a9\ud558\ub294 \ubc29\ubc95\uc774 \ud3ec\ud568\ub429\ub2c8\ub2e4. \uc774\uc2dd\uc774 \uc131\uacf5\ud558\uba74 \uc2e0\uccb4\ub294 \uace0\uc815 \uc12c\uc720\ub97c \uc0dd\uc131\ud558\uc5ec \uae30\uc874 \ud53c\ubd80\uc640 \uc774\uc2dd\ud3b8 \uc0ac\uc774\uc758 \ub9e4\ub044\ub7ec\uc6b4 \uc5f0\uacb0\uc744 \ud615\uc131\ud569\ub2c8\ub2e4. \ub610 \ub2e4\ub978 \uc9c4\uc804 \uc9d5\ud6c4\ub294 \uacb0\ud569 \uc870\uc9c1\uc5d0\uc11c \ubc1c\uacac\ub418\ub294 \uad6c\uc870 \ub2e8\ubc31\uc9c8\uc778 \ucf5c\ub77c\uac90\uc774 \uc774\uc2dd\ud3b8 \uae30\uc800\ubd80\uc5d0 \uc874\uc7ac\ud55c\ub2e4\ub294 \uac83\uc785\ub2c8\ub2e4. \ubbf8\uad6d \uc2dd\ud488\uc758\uc57d\uad6d(FDA)\uc740 \uc784\uc0c1\uc2dc\ud5d8 \uae30\uac04 \ub3d9\uc548 \uc5f0\uad6c\ud300\uc5d0 \uce58\ub8cc \ud6a8\uacfc\ub97c \ucd94\uc801\ud558\ub3c4\ub85d \uc694\uad6c\ud558\uba70, \uc774\ub97c \uc704\ud574 \uc885\uc885 \uce58\ub8cc \ubd80\uc704\uc758 \uace0\ud1b5\uc2a4\ub7ec\uc6b4 \uc0dd\uac80\uc774 \ud544\uc694\ud569\ub2c8\ub2e4.<\/p>\n

Heal EB\uc758 \uc790\uae08 \uc9c0\uc6d0\uc744 \ubc1b\uc544 Lane\uc758 \ud300\uc740 \uc0dd\uccb4\uac80\uc0ac\ubcf4\ub2e4 \uce68\uc2b5\uc131\uc774 \ub0ae\uace0 \ud1b5\uc99d\uc774 \ub35c\ud55c \uce21\uc815 \ub3c4\uad6c\ub97c \uac1c\ubc1c\ud558\uace0, \uc784\uc0c1 \uc2dc\ud5d8\uc5d0\uc11c \ud14c\uc2a4\ud2b8 \uc911\uc778 \uc811\uadfc \ubc29\uc2dd\uc758 \ud6a8\uacfc\ub97c \ud3c9\uac00\ud558\ub294 \ub370 \ud544\uc694\ud55c \ud45c\uba74\uc801\uc744 \uc81c\ud55c\ud558\uae30 \uc704\ud574 \ub178\ub825\ud560 \uc608\uc815\uc785\ub2c8\ub2e4.<\/p>\n

Heal EB\uc758 \uacf5\ub3d9 \uc124\ub9bd\uc790\uc774\uc790 \uac04\ud638\uc0ac\uc774\uba70, \uc774 \uc9c8\ud658\uc744 \uc553\uace0 \uc788\ub294 \uc5b4\ub9b0 \uc544\uc774\uc758 \uc5b4\uba38\ub2c8\uc778 \ud5e4\ub354 \ud480\uba38\ub294 "\uc678\uc0c1\uc744 \ub35c \ubc1b\ub294 \uae30\uae30 \uac1c\ubc1c\uc5d0 \uc790\uae08\uc744 \uc9c0\uc6d0\ud558\ub294 \uac83\uc774 \uc800\ud76c\uc758 \ucd5c\uc6b0\uc120 \uacfc\uc81c\uc785\ub2c8\ub2e4. \uce21\uc815 \uae30\uae30\uac00 \uac1c\ubc1c\ub418\uba74 \uc784\uc0c1\uc758\ub4e4\uc740 \ud53c\ubd80 \ud45c\uba74\uc5d0 \uacfc\ub3c4\ud55c \uc678\uc0c1\uc744 \uc720\ubc1c\ud558\uc9c0 \uc54a\uace0\ub3c4 \uce58\ub8cc \ud6a8\uacfc\ub97c \ub354\uc6b1 \uc2e0\ub8b0\ud560 \uc218 \uc788\uace0 \uc815\ud655\ud558\uac8c \uce21\uc815\ud560 \uc218 \uc788\uac8c \ub420 \uac83\uc785\ub2c8\ub2e4. \ud604\uc7ac \uc784\uc0c1 \uc2dc\ud5d8 \uc804\uccb4\uc5d0 \uac78\uccd0 \uc5ec\ub7ec \ubc88\uc758 \uce21\uc815\uc774 \ud544\uc694\ud55c\ub370, \uc774\ub294 EB\ub97c \uc553\uace0 \uc788\ub294 \uc544\uc774\ub4e4\uc5d0\uac8c \ud070 \uc601\ud5a5\uc744 \ubbf8\uce69\ub2c8\ub2e4. \uc774\ub7ec\ud55c \uc784\uc0c1 \uc2dc\ud5d8\uc744 \uc2e0\uc18d\ud558\uac8c \uc9c4\ud589\ud560 \uc218 \uc788\ub3c4\ub85d \ub3c4\uc6b8 \uae30\uae30 \uac1c\ubc1c\uc5d0 \ucc38\uc5ec\ud558\uac8c \ub418\uc5b4 \uc601\uad11\uc785\ub2c8\ub2e4."\ub77c\uace0 \ub9d0\ud588\uc2b5\ub2c8\ub2e4.<\/p>\n

\ud790 EB\uc758 \ucd5c\uace0\uc6b4\uc601\ucc45\uc784\uc790(COO) \uc9c8 \ubca0\ub354\ub294 \ubc34\ub4dc \ud384 \uc7bc\uc758 \ub9ac\ub4dc \uc2f1\uc5b4\uc774\uc790 \ub0a8\ud3b8\uc778 \uc5d0\ub514 \ubca0\ub354\uc640 \ud568\uaed8 \ud790 EB \uc7ac\ub2e8 \uc774\uc0ac\ud68c\uc5d0\uc11c \ud65c\ub3d9\ud558\uac8c \ub418\uc5b4 \uc790\ub791\uc2a4\ub7fd\ub2e4\uace0 \ub367\ubd99\uc600\uc2b5\ub2c8\ub2e4. \ud480\uba38\uc2a4 \ubd80\ubd80\uc758 \uc790\ub140\uc640\uc758 \uc778\uc5f0\uc740 \uc804 \uc138\uacc4 EB \uc544\ub3d9\ub4e4\uc758 \uc0b6\uc744 \uac1c\uc120\ud558\uae30 \uc704\ud55c \uadf8\ub4e4\uc758 \ud65c\ub3d9\uc5d0 \uc601\uac10\uc744 \ubd88\uc5b4\ub123\uc2b5\ub2c8\ub2e4.<\/p>\n

\ubca0\ub354\ub294 "\uc774 \uc9c8\ubcd1\uc774 \uc5b4\ub9b0 \uc544\ub4e4\uc5d0\uac8c \ubbf8\uce58\ub294 \uc601\ud5a5\uc744 \uc9c0\ucf1c\ubcf4\uace0, \uadf8\uc758 \ub180\ub77c\uc6b4 \uac15\uc778\ud568\uacfc \ud68c\ubcf5\ub825\uc744 \ubaa9\uaca9\ud558\uba74\uc11c \uc6b0\ub9ac\ub294 \ub9e4\uc77c \uae30\uae08\uc744 \ubaa8\uc73c\uace0 \uce58\ub8cc\ubc95\uc744 \ucc3e\uae30 \uc704\ud574 \ub178\ub825\ud574\uc57c\uaca0\ub2e4\ub294 \ub3d9\uae30\ub97c \uc5bb\uc2b5\ub2c8\ub2e4."\ub77c\uace0 \ub9d0\ud588\uc2b5\ub2c8\ub2e4.<\/p>\n

Heal EB \uae30\ubd80\ub294 \uc9c0\ub09c \uac00\uc744 \ub9d0\ub9ac\ubd80\uc5d0\uc11c \uc5f4\ub9b0 \uc790\uc120 \ud589\uc0ac\ub97c \ud1b5\ud574 \uac00\ub2a5\ud574\uc84c\uc2b5\ub2c8\ub2e4. \uc774 \uae30\ubd80\uc5d0 \uc55e\uc11c Heal EB\ub294 2013\ub144 \uc124\ub9bd \uccab\ud574\uc5d0 \ubaa8\uae08\ud55c \uae30\uae08\uc73c\ub85c Lane\uc758 \uc720\uc804\uc790 \uc774\uc2dd \uc2dc\ud5d8\uc5d0 $95,000\uc744 \uae30\ubd80\ud588\uc2b5\ub2c8\ub2e4.<\/p>\n

Vedders\uc640 \uac19\uc740 \uc5b4\ub9b0\uc774\ub97c \uc704\ud55c \ucc54\ud53c\uc5b8\uc774 \ub418\uc2ed\uc2dc\uc624. \ubaa8\uae08 \ud589\uc0ac\ub97c \uacc4\ud68d\ud558\uc138\uc694<\/a> \uc624\ub298!<\/p>","protected":false},"excerpt":{"rendered":"

\ud76c\uadc0\ud558\uace0 \uc0dd\uba85\uc744 \uc704\ud611\ud558\ub294 \uc720\uc804\uc131 \ud53c\ubd80 \uc9c8\ud658\uc778 \ud45c\ud53c\uc218\ud3ec\uc99d(EB) \uce58\ub8cc\ubc95 \uac1c\ubc1c\uc744 \ud5a5\ud55c \ub610 \ub2e4\ub978 \ub2e8\uacc4\ub85c, \ub0a8\ubd80 \uce98\ub9ac\ud3ec\ub2c8\uc544\uc5d0 \uc704\uce58\ud55c \ube44\uc601\ub9ac \ub2e8\uccb4\uac00\u2026<\/p>","protected":false},"author":17,"featured_media":3503,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[21,22],"class_list":["post-3502","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-donor-stories","category-patient-stories"],"acf":[],"yoast_head":"\n\u2018Heal EB\u2019 and Eddie and Jill Vedder help fund treatments for children with life-threatening skin disorder - 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