{"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\/tl\/impact-stories\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/","title":{"rendered":"Tumutulong ang &#039;Heal EB&#039; at sina Eddie at Jill Vedder na pondohan ang mga paggamot para sa mga batang may sakit sa balat na nagbabanta sa buhay"},"content":{"rendered":"<p><span style=\"line-height: 1.538em;\">Sa isa pang hakbang tungo sa posibleng pagbuo ng lunas para sa Epidermolysis Bullosa (EB), isang bihira at nakamamatay na genetic skin disorder, ang non-profit na Heal EB na nakabase sa Southern California, www.healeb.org, ay nag-donate ng $50,000 bilang suporta sa pananaliksik ni Alfred Lane, MD, propesor emeritus ng dermatology at pediatrics sa Stanford University School of Medicine. Pinangungunahan ni Lane ang mga klinikal na pagsubok upang bumuo ng mga bagong teknolohiya upang masuri ang balat ng mga may EB at mabawasan ang pangangailangan para sa mga skin biopsy. Inaalagaan din niya ang mga batang may EB sa Lucile Packard Children&#039;s Hospital Stanford, isa sa iilang ospital lamang sa bansa na may ganitong kadalubhasaan.<\/span><\/p>\n<p>Kabilang sa mga kasalukuyang isinasagawang pagsubok ang pagsubok sa paggamit ng mga stem cell upang &quot;magpatubo&quot; ng bagong balat na maaaring idugtong sa mga sugat ng mga pasyenteng may EB. Kung magtagumpay ang isang graft, ang katawan ay gagawa ng mga anchoring fibril, na tumutulong na lumikha ng isang tuluy-tuloy na koneksyon sa pagitan ng umiiral na balat at graft. Ang isa pang senyales ng pag-unlad ay ang pagkakaroon ng collagen, isang structural protein na matatagpuan sa connective tissue, sa base ng graft. Sa buong mga pagsubok, hinihiling ng Food and Drug Administration (FDA) sa pangkat na subaybayan ang bisa ng paggamot, na kadalasang nangangailangan ng masasakit na biopsy sa mga ginamot na bahagi ng balat.<\/p>\n<p>Gamit ang pondo mula sa Heal EB, ang pangkat ni Lane ay magsisikap na bumuo ng isang kagamitan sa pagsukat na hindi gaanong invasive at hindi gaanong masakit kaysa sa mga biopsy at naglilimita sa surface area na kailangan upang masuri ang bisa ng pamamaraang sinusubok sa clinical trial.<\/p>\n<p>Sinabi ni Heather Fullmer, isa sa mga nagtatag ng Heal EB, isang nars, at ina ng isang batang may sakit na ito, \u201cAng pagpopondo ng isang aparato na hindi gaanong traumatiko ay isang prayoridad para sa amin. Sa pagbuo ng isang aparatong panukat, ang mga clinician ay magkakaroon ng mas maaasahan at tumpak na paraan ng pagsukat ng bisa ng paggamot, nang hindi kinakailangang magdulot ng labis na trauma sa ibabaw ng balat. Sa kasalukuyan, maraming pagsukat ang kinakailangan sa buong pagsubok na may malaking epekto sa mga batang may EB. Isang karangalan para sa amin na maging bahagi ng pagbuo ng isang aparato na makakatulong na mapabilis ang mga klinikal na pagsubok na ito.\u201d<\/p>\n<p>Dagdag pa ni Jill Vedder, COO ng Heal EB, na siya at ang kanyang asawang si Eddie Vedder, lead singer ng bandang Pearl Jam, ay ipinagmamalaki ang paglilingkod sa board ng Heal EB foundation. Ang kanilang koneksyon sa anak ng mga Fullmer ay nagbibigay-inspirasyon sa kanilang pagsisikap na mapabuti ang buhay ng mga bata sa buong mundo gamit ang EB.<\/p>\n<p>&quot;Ang panonood sa mga epekto ng sakit na ito sa kanilang batang anak na lalaki, at ang pagsaksi sa kanyang hindi kapani-paniwalang lakas at katatagan, ay nag-uudyok sa amin araw-araw na magtrabaho tungo sa pagpopondo at paghahanap ng lunas,&quot; sabi ni Vedder.<\/p>\n<p>Ang regalong Heal EB ay naging posible dahil sa isang kaganapang pangkawanggawa na ginanap sa Malibu noong nakaraang taglagas. Bago ang regalong ito, ang Heal EB ay nag-ambag ng $95,000 sa mga pagsubok sa paglilipat ng gene ng Lane noong 2013 mula sa mga pondong nalikom sa unang taon ng organisasyon.<\/p>\n<p>Maging isang Kampeon para sa mga Batang tulad ng mga Vedder, at <a href=\"http:\/\/live-give-stanfordchildrens.gotpantheon.com\/get-involved\/plan-fundraiser\">planuhin ang iyong kaganapan sa pangangalap ng pondo<\/a> ngayon!<\/p>","protected":false},"excerpt":{"rendered":"<p>Sa isa pang hakbang tungo sa posibleng pag-unlad ng isang lunas para sa Epidermolysis Bullosa (EB), isang bihira at nakamamatay na genetic skin disorder, ang Southern California-based non-profit...<\/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":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - 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