{"id":7838,"date":"2017-02-24T00:00:00","date_gmt":"2017-02-23T23:00:00","guid":{"rendered":"https:\/\/idibell.cat\/blog\/2017\/02\/24\/la-regata-carla-presenta-una-segona-edicio-dinamica-i-solidaria\/"},"modified":"2020-05-13T19:46:54","modified_gmt":"2020-05-13T17:46:54","slug":"la-regata-carla-presenta-una-segona-edicio-dinamica-i-solidaria","status":"publish","type":"post","link":"https:\/\/idibell.cat\/2017\/02\/la-regata-carla-presenta-una-segona-edicio-dinamica-i-solidaria\/","title":{"rendered":"La Regata Carla presenta una segona edici\u00f3 din\u00e0mica i solid\u00e0ria"},"content":{"rendered":"<p>Ahir al mat\u00ed es va presentar a la Diputaci\u00f3 de Girona la segona edici\u00f3 de la Regata Carla, de Sant Feliu de Gu\u00edxols, que tindr\u00e0 lloc els dies 4 i 5 de mar\u00e7 al municipi baixempordan\u00e8s. L\u2019esdeveniment inclour\u00e0 activitats paral\u00b7leles destinades a tots el p\u00fablics, com per exemple una concentraci\u00f3 de <em>food trucks<\/em> i diversos concerts a l\u2019aire lliure. La presentaci\u00f3 ha estat a c\u00e0rrec d\u2019Artur Gri\u00f1\u00f3, impulsor de la regata; Maribel Vela, gerent del Club N\u00e0utic Sant Feliu de Gu\u00edxols; David Oliveras, regidor d\u2019Esports i Joventut de l\u2019Ajuntament de Sant Feliu de Gu\u00edxols, i S\u00f2nia Guil, directora del Projecte de Recerca Rett a l\u2019Institut d\u2019Investigaci\u00f3 Biom\u00e8dica de Bellvitge (IDIBELL). <\/p>\n<p> La Regata Carla t\u00e9 com a objectiu donar a con\u00e8ixer la S\u00edndrome de Rett, sensibilitzar la societat sobre les dificultats que aquesta malaltia comporta, recaptar recursos econ\u00f2mics per a la recerca sobre la Rett i promoure els valors de la solidaritat i del comprom\u00eds entre els regatistes i assistents a la trobada. Els fons recaptats durant la jornada es destinaran a IDIBELL, que compta amb un projecte de recerca destinat a la investigaci\u00f3 sobre la S\u00edndrome de Rett. La primera edici\u00f3 de la Regata, que va tenir lloc l\u2019any passat, va comptar amb gaireb\u00e9 500 assistents d\u2019arreu de Catalunya i va aconseguir recaptar 7.000 \u20ac, aproximadament, que es van donar a IDIBELL. \u00abTots els diners que es donen a aquest laboratori es destinen \u00edntegrament a la recerca i en fan un \u00fas al cent per cent transparent\u00bb, ha explicat Artur Gri\u00f1\u00f3. <\/p>\n<p> Dolors Aixal\u00e0 i Artur Gri\u00f1\u00f3 s\u00f3n els pares de Carla, una nena que patia la S\u00edndrome de Rett. Amb la intenci\u00f3 d\u2019homenatjar-la, Dolors i Artur van plantejar la idea de la Regata a Gonzalo de Maqua, antic president de l\u2019Associaci\u00f3 Catalana de la Classe Internacional Optimist<\/p>\n<p> (ACCIO), que va endegar el projecte. Despr\u00e9s, s\u2019hi van sumar la resta de col\u00b7laboradors: el Club N\u00e0utic Sant Feliu de Gu\u00edxols, l\u2019Associaci\u00f3 Catalana de la S\u00edndrome de la Rett i l\u2019Ajuntament de Sant Feliu de Gu\u00edxols. Maribel Vela ha subratllat que \u00abper fer possible una segona edici\u00f3 d\u2019un esdeveniment com aquest cal m\u00e9s coratge\u00bb, motiu pel qual, David Oliveras ha fet palesa la necessitat de fer arribar a m\u00e9s gent la Regata Carla. Com ha exposat el regidor d\u2019Esports i Joventut de Sant Feliu de Gu\u00edxols, \u00abla iniciativa va m\u00e9s enll\u00e0 d\u2019un esdeveniment esportiu; es tracta d\u2019una jornada l\u00fadica amb activitats dinamitzadores destinades a tots els p\u00fablics\u00bb. \u00abNo \u00e9s nom\u00e9s una jornada esportiva, sin\u00f3 que tamb\u00e9 \u00e9s una gran festa per a tothom que promou els valors propis de la pr\u00e0ctica de la vela, com el comprom\u00eds, l\u2019esfor\u00e7, l\u2019esperit de superaci\u00f3\u00bb, ha dit Maribel Vela.<\/p>\n<p> Durant la presentaci\u00f3 S\u00f2nia Guil tamb\u00e9 ha defensat que \u00abmoltes fam\u00edlies tiren endavant iniciatives com la Regata Carla de manera privada. \u00c9s molt important el suport p\u00fablic a la recerca, perqu\u00e8 \u00e9s el que garanteix el desenvolupament favorable de la societat\u00bb. <\/p>\n<p> La S\u00edndrome de Rett \u00e9s una malaltia gen\u00e8rica que afecta el desenvolupament neurol\u00f2gic, sobretot de les nenes. La malaltia apareix entre els sis i els divuit mesos per la mutaci\u00f3 del gen MECP2, un gen epigen\u00e8tic que controla l\u2019activitat de molts altres gens. Aquesta mutaci\u00f3 provoca un trastorn neurol\u00f2gic complex que produeix una degeneraci\u00f3 psicomotora, p\u00e8rdua del llenguatge, problemes respiratoris, escoliosi, etc. Es tracta d\u2019una s\u00edndrome sense cura, encara que durant les darreres d\u00e8cades hi ha hagut aven\u00e7os cient\u00edfics que deixen entreveure la possibilitat de revertir la malaltia.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Els diners recaptats es destinaran a la recerca sobre la S\u00edndrome de Rett La S\u00edndrome de Rett<\/p>\n","protected":false},"author":6,"featured_media":10691,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"default","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""}},"footnotes":""},"categories":[1],"tags":[],"publishpress_future_action":{"enabled":false,"date":"2024-05-10 20:53:35","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category"},"_links":{"self":[{"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/posts\/7838"}],"collection":[{"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/comments?post=7838"}],"version-history":[{"count":0,"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/posts\/7838\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/media\/10691"}],"wp:attachment":[{"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/media?parent=7838"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/categories?post=7838"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/idibell.cat\/wp-json\/wp\/v2\/tags?post=7838"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}