{"id":16858,"date":"2023-10-16T12:55:00","date_gmt":"2023-10-16T10:55:00","guid":{"rendered":"urn:uuid:64313561-3439-5635-b835-396239303238"},"modified":"2023-10-16T15:24:21","modified_gmt":"2023-10-16T13:24:21","slug":"lurbel-colaborara-con-el-reto-maricarmen-en-beneficio-de-la-asociacion-debra-piel-de-mariposa","status":"publish","type":"post","link":"https:\/\/dev.lurbel.eu\/en\/noticias\/lurbel-colaborara-con-el-reto-maricarmen-en-beneficio-de-la-asociacion-debra-piel-de-mariposa","title":{"rendered":"Lurbel colaborar\u00e1 con el Reto Maricarmen en beneficio de la Asociaci\u00f3n DEBRA &#8211; Piel de Mariposa"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><strong>De Marbella a C\u00f3rdoba corriendo por la Piel de Mariposa<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El reto solidario Maricarmen dar\u00e1 el pistoletazo de salida en Marbella, sede de la <a href=\"https:\/\/www.pieldemariposa.es\/\">Asociaci\u00f3n DEBRA<\/a>, el 25 de octubre, D\u00eda Mundial de la Piel de Mariposa. El reto finalizar\u00e1 en C\u00f3rdoba, sede del Colegio Virgen del Carmen, el d\u00eda 1 de noviembre. Un total de 200 kil\u00f3metros en 7 etapas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La motivaci\u00f3n principal del reto que van a llevar a cabo Alfonso y Juan, profesores del colegio Virgen del Carmen, es Pedro. Un alumno que sufre Epiderm\u00f3lisis Bullosa, m\u00e1s conocida como Piel de Mariposa, una enfermedad poco frecuente, gen\u00e9tica e incurable a d\u00eda de hoy, que causa una extrema fragilidad en la piel.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">A trav\u00e9s del Reto Maricarmen se pretende, por una parte, visibilizar y sensibilizar esta afecci\u00f3n, y por otra, la de mejorar las condiciones de vida de los afectados por esta enfermedad.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Lurbel apoyar\u00e1 el reto solidario en beneficio de la Asociaci\u00f3n DEBRA<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Alfonso y Juan contar\u00e1n con el apoyo de Lurbel para recorrer con total garant\u00eda y protecci\u00f3n los 200km que separan Marbella de C\u00f3rdoba.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Lo har\u00e1n equipados por la <a href=\"https:\/\/dev.lurbel.eu\/coleccion-samba\">colecci\u00f3n Samba<\/a> de Lurbel, una equipaci\u00f3n id\u00f3nea para correr por asfalto o terreno mixto, y <a href=\"https:\/\/dev.lurbel.eu\/producto\/distance-three\">calcetines Distance Three<\/a> y <a href=\"https:\/\/dev.lurbel.eu\/producto\/track-four\">Track Four<\/a>, que cuentan con la m\u00e1xima protecci\u00f3n para los pies en carreras de larga distancia o por etapas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Adem\u00e1s, para llevar todo lo necesario durante el reto, la pareja de corredores contar\u00e1 con el cintur\u00f3n <a href=\"https:\/\/dev.lurbel.eu\/producto\/loop-evo-iii\">Loop EVO III<\/a>, con mayor capacidad que el Loop Pro para guardar cortavientos, geles, barritas o incluso un softflask.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Dorsales solidarios para participar en la \u00faltima etapa<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Los beneficios recaudados a trav\u00e9s de la compra de <a href=\"https:\/\/www.facebook.com\/ElCarmenCole\/posts\/pfbid02ziKWwm1ouzjagg8rVYric3xRf6tvujj6zpiQS5R7EGCZpwRAQu2Uk9rdJEowLr21l\">dorsales solidarios<\/a> para acompa\u00f1ar a Alfonso y Juan durante el d\u00eda 1 de noviembre, se destinar\u00e1n al proyecto \u201cEstar Bien\u201d de la asociaci\u00f3n DEBRA, el cual se centra en atender de forma continuada las necesidades que le son requeridas por los afectados, familias, educadores y profesionales sanitarios.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Sobre DEBRA<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La Asociaci\u00f3n Piel de Mariposa (DEBRA Espa\u00f1a) es una organizaci\u00f3n sin \u00e1nimo de lucro que trabaja para mejorar la calidad de vida de los afectados y sus familias.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">DEBRA Piel de Mariposa existe como \u00fanica organizaci\u00f3n de apoyo, para mejorar el d\u00eda a d\u00eda de las familias a lo largo de todas las etapas de su vida. Un equipo incre\u00edblemente comprometido, formado por enfermeras, psic\u00f3logas, trabajadoras sociales y una investigadora, est\u00e1 siempre a su lado, atendiendo todas sus necesidades.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La Piel de Mariposa es una enfermedad de tipo gen\u00e9tico, rara e incurable que provoca una extrema fragilidad de la piel, causando heridas y ampollas por todo el cuerpo ante el m\u00e1s leve roce. Su piel es tan fr\u00e1gil como las alas de una mariposa.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Una de cada 227 personas es portadora del gen defectuoso que provoca la enfermedad, por lo que esta puede irrumpir en cualquier familia de forma inesperada.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Dos profesores del colegio Virgen del Carmen de C\u00f3rdoba se han propuesto recorrer los 200km que separan la sede de la Asociaci\u00f3n DEBRA del colegio Virgen del Carmen. Un total de 7 etapas para visibilizar y sensibilizar la Piel de Mariposa.<\/p>\n","protected":false},"author":60,"featured_media":16863,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[7,1],"tags":[],"class_list":["post-16858","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-eventos-deportivos","category-international"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Lurbel colaborar\u00e1 con el Reto Maricarmen en beneficio de la Asociaci\u00f3n DEBRA - Piel de Mariposa | Lurbel<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Lurbel colaborar\u00e1 con el Reto Maricarmen en beneficio de la Asociaci\u00f3n DEBRA - Piel de Mariposa | Lurbel\" \/>\n<meta property=\"og:description\" content=\"Dos profesores del colegio Virgen del Carmen de C\u00f3rdoba se han propuesto recorrer los 200km que separan la sede de la Asociaci\u00f3n DEBRA del colegio Virgen del Carmen. 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