{"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\/vi\/impact-stories\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/","title":{"rendered":"'Heal EB' v\u00e0 Eddie v\u00e0 Jill Vedder gi\u00fap t\u00e0i tr\u1ee3 cho vi\u1ec7c \u0111i\u1ec1u tr\u1ecb cho tr\u1ebb em m\u1eafc ch\u1ee9ng r\u1ed1i lo\u1ea1n da \u0111e d\u1ecda t\u00ednh m\u1ea1ng"},"content":{"rendered":"

Trong m\u1ed9t b\u01b0\u1edbc ti\u1ebfn n\u1eefa h\u01b0\u1edbng t\u1edbi kh\u1ea3 n\u0103ng ph\u00e1t tri\u1ec3n ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa tr\u1ecb b\u1ec7nh Epidermolysis Bullosa (EB), m\u1ed9t r\u1ed1i lo\u1ea1n da di truy\u1ec1n hi\u1ebfm g\u1eb7p v\u00e0 \u0111e d\u1ecda t\u00ednh m\u1ea1ng, t\u1ed5 ch\u1ee9c phi l\u1ee3i nhu\u1eadn Heal EB c\u00f3 tr\u1ee5 s\u1edf t\u1ea1i Nam California, www.healeb.org, \u0111\u00e3 quy\u00ean g\u00f3p $50.000 \u0111\u1ec3 h\u1ed7 tr\u1ee3 nghi\u00ean c\u1ee9u c\u1ee7a Ti\u1ebfn s\u0129 Alfred Lane, gi\u00e1o s\u01b0 danh d\u1ef1 v\u1ec1 da li\u1ec5u v\u00e0 nhi khoa t\u1ea1i Tr\u01b0\u1eddng Y \u0110\u1ea1i h\u1ecdc Stanford. Lane d\u1eabn \u0111\u1ea7u c\u00e1c th\u1eed nghi\u1ec7m l\u00e2m s\u00e0ng nh\u1eb1m ph\u00e1t tri\u1ec3n c\u00e1c c\u00f4ng ngh\u1ec7 m\u1edbi \u0111\u1ec3 \u0111\u00e1nh gi\u00e1 da c\u1ee7a nh\u1eefng ng\u01b0\u1eddi m\u1eafc EB v\u00e0 gi\u1ea3m nhu c\u1ea7u sinh thi\u1ebft da. \u00d4ng c\u0169ng ch\u0103m s\u00f3c tr\u1ebb em m\u1eafc EB t\u1ea1i B\u1ec7nh vi\u1ec7n Nhi \u0111\u1ed3ng Lucile Packard Stanford, m\u1ed9t trong s\u1ed1 \u00edt b\u1ec7nh vi\u1ec7n tr\u00ean to\u00e0n qu\u1ed1c c\u00f3 chuy\u00ean m\u00f4n n\u00e0y.<\/span><\/p>\n

C\u00e1c th\u1eed nghi\u1ec7m hi\u1ec7n \u0111ang \u0111\u01b0\u1ee3c ti\u1ebfn h\u00e0nh bao g\u1ed3m vi\u1ec7c s\u1eed d\u1ee5ng t\u1ebf b\u00e0o g\u1ed1c \u0111\u1ec3 "ph\u00e1t tri\u1ec3n" da m\u1edbi c\u00f3 th\u1ec3 gh\u00e9p v\u00e0o v\u1ebft th\u01b0\u01a1ng c\u1ee7a b\u1ec7nh nh\u00e2n EB. N\u1ebfu gh\u00e9p th\u00e0nh c\u00f4ng, c\u01a1 th\u1ec3 s\u1ebd s\u1ea3n sinh ra c\u00e1c s\u1ee3i neo, gi\u00fap t\u1ea1o ra s\u1ef1 k\u1ebft n\u1ed1i li\u1ec1n m\u1ea1ch gi\u1eefa da hi\u1ec7n c\u00f3 v\u00e0 m\u1ea3nh gh\u00e9p. M\u1ed9t d\u1ea5u hi\u1ec7u ti\u1ebfn tri\u1ec3n kh\u00e1c l\u00e0 s\u1ef1 hi\u1ec7n di\u1ec7n c\u1ee7a collagen, m\u1ed9t lo\u1ea1i protein c\u1ea5u tr\u00fac \u0111\u01b0\u1ee3c t\u00ecm th\u1ea5y trong m\u00f4 li\u00ean k\u1ebft, \u1edf g\u1ed1c m\u1ea3nh gh\u00e9p. Trong su\u1ed1t c\u00e1c th\u1eed nghi\u1ec7m, C\u1ee5c Qu\u1ea3n l\u00fd Th\u1ef1c ph\u1ea9m v\u00e0 D\u01b0\u1ee3c ph\u1ea9m (FDA) y\u00eau c\u1ea7u nh\u00f3m nghi\u00ean c\u1ee9u theo d\u00f5i hi\u1ec7u qu\u1ea3 c\u1ee7a ph\u01b0\u01a1ng ph\u00e1p \u0111i\u1ec1u tr\u1ecb, th\u01b0\u1eddng \u0111\u00f2i h\u1ecfi ph\u1ea3i sinh thi\u1ebft \u0111au \u0111\u1edbn \u1edf c\u00e1c v\u00f9ng da \u0111\u01b0\u1ee3c \u0111i\u1ec1u tr\u1ecb.<\/p>\n

V\u1edbi ngu\u1ed3n t\u00e0i tr\u1ee3 t\u1eeb Heal EB, nh\u00f3m c\u1ee7a Lane s\u1ebd n\u1ed7 l\u1ef1c ph\u00e1t tri\u1ec3n m\u1ed9t c\u00f4ng c\u1ee5 \u0111o l\u01b0\u1eddng \u00edt x\u00e2m l\u1ea5n v\u00e0 \u00edt \u0111au h\u01a1n so v\u1edbi sinh thi\u1ebft, \u0111\u1ed3ng th\u1eddi h\u1ea1n ch\u1ebf di\u1ec7n t\u00edch b\u1ec1 m\u1eb7t c\u1ea7n thi\u1ebft \u0111\u1ec3 \u0111\u00e1nh gi\u00e1 hi\u1ec7u qu\u1ea3 c\u1ee7a ph\u01b0\u01a1ng ph\u00e1p \u0111ang \u0111\u01b0\u1ee3c th\u1eed nghi\u1ec7m trong th\u1eed nghi\u1ec7m l\u00e2m s\u00e0ng.<\/p>\n

Heather Fullmer, \u0111\u1ed3ng s\u00e1ng l\u1eadp Heal EB, m\u1ed9t y t\u00e1 v\u00e0 l\u00e0 m\u1eb9 c\u1ee7a m\u1ed9t \u0111\u1ee9a tr\u1ebb nh\u1ecf m\u1eafc b\u1ec7nh, cho bi\u1ebft: \u201cVi\u1ec7c t\u00e0i tr\u1ee3 cho m\u1ed9t thi\u1ebft b\u1ecb \u00edt g\u00e2y ch\u1ea5n th\u01b0\u01a1ng h\u01a1n l\u00e0 \u01b0u ti\u00ean h\u00e0ng \u0111\u1ea7u c\u1ee7a ch\u00fang t\u00f4i. V\u1edbi s\u1ef1 ph\u00e1t tri\u1ec3n c\u1ee7a thi\u1ebft b\u1ecb \u0111o l\u01b0\u1eddng, c\u00e1c b\u00e1c s\u0129 l\u00e2m s\u00e0ng s\u1ebd c\u00f3 m\u1ed9t ph\u01b0\u01a1ng ph\u00e1p \u0111\u00e1ng tin c\u1eady v\u00e0 ch\u00ednh x\u00e1c h\u01a1n \u0111\u1ec3 \u0111o l\u01b0\u1eddng hi\u1ec7u qu\u1ea3 \u0111i\u1ec1u tr\u1ecb, m\u00e0 kh\u00f4ng c\u1ea7n ph\u1ea3i g\u00e2y ra qu\u00e1 nhi\u1ec1u ch\u1ea5n th\u01b0\u01a1ng tr\u00ean b\u1ec1 m\u1eb7t da. Hi\u1ec7n t\u1ea1i, c\u1ea7n nhi\u1ec1u ph\u00e9p \u0111o trong su\u1ed1t qu\u00e1 tr\u00ecnh th\u1eed nghi\u1ec7m, \u0111i\u1ec1u n\u00e0y c\u00f3 t\u00e1c \u0111\u1ed9ng r\u1ea5t l\u1edbn \u0111\u1ebfn tr\u1ebb em m\u1eafc EB. Ch\u00fang t\u00f4i r\u1ea5t vinh d\u1ef1 \u0111\u01b0\u1ee3c tham gia ph\u00e1t tri\u1ec3n m\u1ed9t thi\u1ebft b\u1ecb gi\u00fap \u0111\u1ea9y nhanh c\u00e1c th\u1eed nghi\u1ec7m l\u00e2m s\u00e0ng n\u00e0y.\u201d<\/p>\n

Jill Vedder, Gi\u00e1m \u0111\u1ed1c \u0110i\u1ec1u h\u00e0nh c\u1ee7a Heal EB, cho bi\u1ebft th\u00eam r\u1eb1ng c\u00f4 v\u00e0 ch\u1ed3ng, Eddie Vedder, ca s\u0129 ch\u00ednh c\u1ee7a ban nh\u1ea1c Pearl Jam, r\u1ea5t t\u1ef1 h\u00e0o \u0111\u01b0\u1ee3c tham gia h\u1ed9i \u0111\u1ed3ng qu\u1ea3n tr\u1ecb c\u1ee7a qu\u1ef9 Heal EB. M\u1ed1i li\u00ean h\u1ec7 c\u1ee7a h\u1ecd v\u1edbi con g\u00e1i nh\u00e0 Fullmer \u0111\u00e3 truy\u1ec1n c\u1ea3m h\u1ee9ng cho h\u1ecd trong n\u1ed7 l\u1ef1c c\u1ea3i thi\u1ec7n cu\u1ed9c s\u1ed1ng c\u1ee7a tr\u1ebb em m\u1eafc b\u1ec7nh EB tr\u00ean to\u00e0n th\u1ebf gi\u1edbi.<\/p>\n

Vedder cho bi\u1ebft: \u201cVi\u1ec7c ch\u1ee9ng ki\u1ebfn nh\u1eefng t\u00e1c \u0111\u1ed9ng c\u1ee7a c\u0103n b\u1ec7nh n\u00e0y l\u00ean c\u1eadu con trai nh\u1ecf c\u1ee7a h\u1ecd, c\u0169ng nh\u01b0 ch\u1ee9ng ki\u1ebfn s\u1ee9c m\u1ea1nh v\u00e0 kh\u1ea3 n\u0103ng ph\u1ee5c h\u1ed3i \u0111\u00e1ng kinh ng\u1ea1c c\u1ee7a c\u1eadu b\u00e9, \u0111\u00e3 th\u00fac \u0111\u1ea9y ch\u00fang t\u00f4i m\u1ed7i ng\u00e0y n\u1ed7 l\u1ef1c g\u00e2y qu\u1ef9 v\u00e0 t\u00ecm ra ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa tr\u1ecb\u201d.<\/p>\n

M\u00f3n qu\u00e0 Heal EB \u0111\u01b0\u1ee3c th\u1ef1c hi\u1ec7n nh\u1edd m\u1ed9t s\u1ef1 ki\u1ec7n t\u1eeb thi\u1ec7n \u0111\u01b0\u1ee3c t\u1ed5 ch\u1ee9c t\u1ea1i Malibu v\u00e0o m\u00f9a thu n\u0103m ngo\u00e1i. Tr\u01b0\u1edbc m\u00f3n qu\u00e0 n\u00e0y, Heal EB \u0111\u00e3 \u0111\u00f3ng g\u00f3p $95.000 cho c\u00e1c th\u1eed nghi\u1ec7m chuy\u1ec3n gen c\u1ee7a Lane v\u00e0o n\u0103m 2013 t\u1eeb ngu\u1ed3n qu\u1ef9 g\u00e2y qu\u1ef9 trong n\u0103m \u0111\u1ea7u ti\u00ean th\u00e0nh l\u1eadp t\u1ed5 ch\u1ee9c.<\/p>\n

Tr\u1edf th\u00e0nh Nh\u00e0 v\u00f4 \u0111\u1ecbch cho Tr\u1ebb em nh\u01b0 gia \u0111\u00ecnh Vedders, v\u00e0 l\u1eadp k\u1ebf ho\u1ea1ch cho s\u1ef1 ki\u1ec7n g\u00e2y qu\u1ef9 c\u1ee7a b\u1ea1n<\/a> H\u00f4m nay!<\/p>","protected":false},"excerpt":{"rendered":"

Trong m\u1ed9t b\u01b0\u1edbc ti\u1ebfn n\u1eefa h\u01b0\u1edbng t\u1edbi kh\u1ea3 n\u0103ng ph\u00e1t tri\u1ec3n ph\u01b0\u01a1ng ph\u00e1p ch\u1eefa tr\u1ecb b\u1ec7nh Epidermolysis Bullosa (EB), m\u1ed9t ch\u1ee9ng r\u1ed1i lo\u1ea1n da di truy\u1ec1n hi\u1ebfm g\u1eb7p v\u00e0 \u0111e d\u1ecda t\u00ednh m\u1ea1ng, t\u1ed5 ch\u1ee9c phi l\u1ee3i nhu\u1eadn c\u00f3 tr\u1ee5 s\u1edf t\u1ea1i Nam California\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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