{"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\/es\/impact-stories\/heal-eb-and-eddie-and-jill-vedder-help-fund-treatments-for-children-with-life-threatening-skin-disorder\/","title":{"rendered":"&#039;Heal EB&#039; y Eddie y Jill Vedder ayudan a financiar tratamientos para ni\u00f1os con trastornos de la piel potencialmente mortales"},"content":{"rendered":"<p><span style=\"line-height: 1.538em;\">En un paso m\u00e1s hacia el posible desarrollo de una cura para la Epiderm\u00f3lisis Bullosa (EB), un trastorno gen\u00e9tico de la piel poco com\u00fan y potencialmente mortal, la organizaci\u00f3n sin fines de lucro Heal EB, con sede en el sur de California (www.healeb.org), ha realizado una donaci\u00f3n de $50,000 para apoyar la investigaci\u00f3n del Dr. Alfred Lane, profesor em\u00e9rito de dermatolog\u00eda y pediatr\u00eda en la Facultad de Medicina de la Universidad de Stanford. Lane lidera ensayos cl\u00ednicos para desarrollar nuevas tecnolog\u00edas que eval\u00faen la piel de las personas con EB y reduzcan la necesidad de biopsias. Tambi\u00e9n atiende a ni\u00f1os con EB en el Lucile Packard Children&#039;s Hospital Stanford, uno de los pocos hospitales del pa\u00eds con esta experiencia.<\/span><\/p>\n<p>Los ensayos actualmente en curso incluyen la prueba del uso de c\u00e9lulas madre para desarrollar piel nueva que pueda injertarse en las heridas de pacientes con EB. Si el injerto tiene \u00e9xito, el cuerpo producir\u00e1 fibrillas de anclaje, que ayudan a crear una conexi\u00f3n fluida entre la piel existente y el injerto. Otra se\u00f1al de progreso es la presencia de col\u00e1geno, una prote\u00edna estructural presente en el tejido conectivo, en la base del injerto. Durante los ensayos, la Administraci\u00f3n de Alimentos y Medicamentos (FDA) exige al equipo que monitoree la eficacia del tratamiento, lo que a menudo requiere biopsias dolorosas de las zonas de piel tratadas.<\/p>\n<p>Con la financiaci\u00f3n de Heal EB, el equipo de Lane trabajar\u00e1 para desarrollar una herramienta de medici\u00f3n que sea menos invasiva y menos dolorosa que las biopsias y que limite la superficie necesaria para evaluar la eficacia del enfoque que se est\u00e1 probando en el ensayo cl\u00ednico.<\/p>\n<p>Heather Fullmer, cofundadora de Heal EB, enfermera y madre de un ni\u00f1o peque\u00f1o que padece la enfermedad, afirm\u00f3: \u00abFinanciar un dispositivo menos traum\u00e1tico es una prioridad para nosotros. Con el desarrollo de un dispositivo de medici\u00f3n, los profesionales sanitarios dispondr\u00e1n de una forma m\u00e1s fiable y precisa de medir la eficacia del tratamiento, sin tener que inducir tanto traumatismo en la superficie de la piel. Actualmente, se requieren m\u00faltiples mediciones a lo largo del ensayo, lo cual tiene un gran impacto en los ni\u00f1os con EB. Nos honra participar en el desarrollo de un dispositivo que ayudar\u00e1 a agilizar estos ensayos cl\u00ednicos\u00bb.<\/p>\n<p>Jill Vedder, directora de operaciones de Heal EB, a\u00f1adi\u00f3 que ella y su esposo, Eddie Vedder, vocalista de la banda Pearl Jam, se enorgullecen de formar parte de la junta directiva de la fundaci\u00f3n Heal EB. Su conexi\u00f3n con el hijo de los Fullmer inspira su labor para mejorar la vida de los ni\u00f1os con EB en todo el mundo.<\/p>\n<p>\u201cObservar el impacto de esta enfermedad en su hijo peque\u00f1o y ser testigo de su incre\u00edble fortaleza y resiliencia nos motiva cada d\u00eda a trabajar para conseguir fondos y encontrar una cura\u201d, dijo Vedder.<\/p>\n<p>La donaci\u00f3n de Heal EB fue posible gracias a un evento ben\u00e9fico celebrado en Malib\u00fa el oto\u00f1o pasado. Antes de esta donaci\u00f3n, Heal EB contribuy\u00f3 con $95,000 a los ensayos de transferencia gen\u00e9tica de Lane en 2013, provenientes de los fondos recaudados durante el primer a\u00f1o de la organizaci\u00f3n.<\/p>\n<p>Convi\u00e9rtete en un campe\u00f3n para los ni\u00f1os como los Vedders y <a href=\"http:\/\/live-give-stanfordchildrens.gotpantheon.com\/get-involved\/plan-fundraiser\">planifique su evento de recaudaci\u00f3n de fondos<\/a> \u00a1hoy!<\/p>","protected":false},"excerpt":{"rendered":"<p>En otro paso hacia el posible desarrollo de una cura para la epiderm\u00f3lisis bullosa (EB), un trastorno gen\u00e9tico de la piel raro y potencialmente mortal, la organizaci\u00f3n sin fines de lucro con sede en el sur de 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":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - 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