{"id":1361,"date":"2015-10-13T15:39:21","date_gmt":"2015-10-13T15:39:21","guid":{"rendered":"http:\/\/sindromecharge.es\/?p=1361"},"modified":"2015-10-13T15:41:23","modified_gmt":"2015-10-13T15:41:23","slug":"cronica-iv-congreso-sindrome-charge","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2015\/10\/13\/cronica-iv-congreso-sindrome-charge\/","title":{"rendered":"Cr\u00f3nica: IV Congreso S\u00edndrome CHARGE."},"content":{"rendered":"<p>Pamplona, s\u00e1bado 3 de Octubre de 2015.<\/p>\n<p>Arranca el d\u00eda con un sol fant\u00e1stico, no sabemos exactamente que tipo de ritual m\u00e1gico han hecho los organizadores del congreso para conseguirlo pero\u00a0de verdad que\u00a0les ha salido un d\u00eda espectacular.<\/p>\n<p>Nos acercamos hasta <a href=\"http:\/\/museo.unav.edu\/\" target=\"_blank\">el museo<\/a>\u00a0\u00a0<a href=\"http:\/\/www.unipamplona.edu.co\/\" target=\"_blank\">Universidad de <\/a>Navarra, que ser\u00e1 la sede de este congreso, para recibir las acreditaciones y acceder a las conferencias.\u00a0Tan solo damos un paso dentro del museo y nos quedamos boquiabiertos, las instalaciones son impresionantes.<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/09\/unipamplona4.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-1284 size-full\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/09\/unipamplona4.jpg\" alt=\"unipamplona4\" width=\"835\" height=\"555\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/09\/unipamplona4.jpg 835w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/09\/unipamplona4-300x199.jpg 300w\" sizes=\"auto, (max-width: 835px) 100vw, 835px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Dos muchachitos\u00a0se nos acercan para darnos la bienvenida y entregarnos el programa del congreso, son el hijo mayor y uno de los sobrinos de Teresa y Juanjo socios y organizadores del congreso, y muy amablemente nos llevan pr\u00e1cticamente de la mano hasta el primer piso donde nos esperan las voluntarias que se har\u00e1n cargo de nuestros ni\u00f1os mientras disfrutamos de las ponencias.<\/p>\n<p>Las voluntarias se presentan y nos\u00a0piden informaci\u00f3n acerca de los ni\u00f1os para tener en cuenta las diferentes capacidades de estos y adaptar los juegos y talleres de forma individualizada. Nos comentan que como hace buen d\u00eda, saldr\u00e1n fuera con los ni\u00f1os a jugar en el c\u00e9sped\u00a0a eso de media ma\u00f1ana. As\u00ed pues dejamos a los ni\u00f1os en buenas manos y nos dirigimos dos pisos m\u00e1s abajo hasta la sala de conferencias, donde Juanjo y Teresa ya nos esperan. Poco a poco todo el mundo va tomando asiento.<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AoM0aR70EbkzkLl_gycjuVb1GzsUG9mmGxwTSODtU-Gw.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-1383\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AoM0aR70EbkzkLl_gycjuVb1GzsUG9mmGxwTSODtU-Gw-1024x768.jpg\" alt=\"AoM0aR70EbkzkLl_gycjuVb1GzsUG9mmGxwTSODtU-Gw\" width=\"1024\" height=\"768\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AoM0aR70EbkzkLl_gycjuVb1GzsUG9mmGxwTSODtU-Gw-1024x768.jpg 1024w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AoM0aR70EbkzkLl_gycjuVb1GzsUG9mmGxwTSODtU-Gw-300x225.jpg 300w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AoM0aR70EbkzkLl_gycjuVb1GzsUG9mmGxwTSODtU-Gw.jpg 1600w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/p>\n<p>La introducci\u00f3n y bienvenida al congreso corre a cargo\u00a0de M\u00f3nica y Juanjo, presidenta de la asociaci\u00f3n y organizador del congreso respectivamente, los cuales dan paso al Dr. Adri\u00e1n Cano quien\u00a0nos\u00a0da una charla muy amena sobre la importancia de la familia. Se suceden las preguntas por parte de los asistentes y finalmente por falta de tiempo se interrumpe la ronda de preguntas y el Dr. Cano se despide no sin antes recibir un caluroso aplauso.<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-1382\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-1024x576.jpg\" alt=\"unnamed\" width=\"1024\" height=\"576\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-1024x576.jpg 1024w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-300x169.jpg 300w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>La siguiente conferencia es impartida por la Dra.\u00a0Raquel Manrique\u00a0quien nos explica las diferentes causas de hipoacusia que existen y c\u00f3mo tratarlas en cada caso. Al finalizar su intervenci\u00f3n, responde a las dudas que plantea el p\u00fablico. Despedimos a la doctora con un merecido aplauso.<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-1381\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-1-1024x576.jpg\" alt=\"unnamed (1)\" width=\"1024\" height=\"576\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-1-1024x576.jpg 1024w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-1-300x169.jpg 300w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Hacemos una pausa para ir a tomar un caf\u00e9 y de paso ir a ver que hacen nuestros ni\u00f1os, el museo sigue en pie y no hay escombros por ninguna parte ni techos derrumbandose, eso es buena se\u00f1al. Como era de esperar los ni\u00f1os est\u00e1n perfectamente bien y muy entretenidos con las voluntarias.<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-1388\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_-576x1024.jpg\" alt=\"Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_\" width=\"576\" height=\"1024\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_-576x1024.jpg 576w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_-169x300.jpg 169w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_-300x533.jpg 300w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_.jpg 900w\" sizes=\"auto, (max-width: 576px) 100vw, 576px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Terminamos el caf\u00e9 y volvemos de nuevo a la sala de conferencias. La Dra. Roc\u00edo S\u00e1nchez-Carpintero Abad nos habla de la conducta en los ni\u00f1os con CHARGE , nos explica posibles motivos de diferentes conductas y como\u00a0tratarlas y prevenirlas.\u00a0Al final de la charla se realiza una ronda de preguntas y se da por finalizada la sesi\u00f3n.<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-17.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-1365\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-17-1024x576.jpg\" alt=\"unnamed (17)\" width=\"1024\" height=\"576\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-17-1024x576.jpg 1024w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/unnamed-17-300x169.jpg 300w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Recogemos a nuestros ni\u00f1os y nos vamos a comer en la propia universidad. Por la tarde, nuevamente las voluntarias se har\u00e1n cargo de nuestros ni\u00f1os mientras asistimos a la asamblea general de socios. Terminamos a eso de las 18h y nos dividimos en grupos, unos iremos a cenar al centro comercial y a dormir pronto y otros ir\u00e1n de pintxos a la Plaza del Castillo.<\/p>\n<p>El domingo nos permitimos un peque\u00f1o lujo: madrugar un poco menos. Regresamos al Museo Universidad de Navarra, donde las voluntarias nos esperan con una gran sonrisa. Esta vez, todo es m\u00e1s f\u00e1cil pues ya conocen a nuestros ni\u00f1os y han establecido un v\u00ednculo especial con cada uno de ellos.<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-1388\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_-576x1024.jpg\" alt=\"Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_\" width=\"576\" height=\"1024\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_-576x1024.jpg 576w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_-169x300.jpg 169w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_-300x533.jpg 300w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/Ah4npDoyFrx3lj1uojdBknYttSjbvKNkdnNd_jtbKzV_.jpg 900w\" sizes=\"auto, (max-width: 576px) 100vw, 576px\" \/><\/a><\/p>\n<p>Contin\u00faa el programa del Congreso con una mesa redonda en la que se pone de manifiesto la importancia del trabajo en equipo a la hora de afrontar el reto educativo que suponen nuestros ni\u00f1os en cada una de sus etapas.<\/p>\n<p>Como ponentes, participan cuatro personas que nos dan una visi\u00f3n conjunta de c\u00f3mo trabajan con una ni\u00f1a con s\u00edndrome CHARGE en Navarra, Mar\u00eda. Comienza Esperanza Calder\u00f3n, especialista en intervenci\u00f3n temprana de la ONCE, quien resalta la gran importancia que tiene el papel de los padres, cuya implicaci\u00f3n es esencial en esa primera fase del ni\u00f1o; contin\u00faa Marta Garc\u00eda, orientadora del colegio Miravalles, para explicarnos c\u00f3mo integra el colegio a Mar\u00eda, c\u00f3mo se forma el profesorado para atenderla mejor y c\u00f3mo se coordinan con la ONCE y el CREENA (Centro de Recursos de Educaci\u00f3n Especial de Navarra, perteneciente al Gobierno de Navarra); le toma la palabra Isabel de Andr\u00e9s, del equipo de visuales del CREENA, para mostrarnos los medios con que apoyan cada fase de su aprendizaje, atendiendo a cada una de las necesidades que van surgiendo; y, finalmente, cierra la mesa redonda Jessica Mar\u00edn, especialista en necesidades educativas especiales, quien a trav\u00e9s del apoyo personalizado que cada tarde presta a Mar\u00eda al finalizar el colegio, nos emociona a todos al referirse a ella como, simplemente, Mar\u00eda. Es m\u00e1s, hasta hace bien poco, ni siquiera sab\u00eda qu\u00e9 era el S\u00edndrome de CHARGE, por lo que en ning\u00fan momento le ha puesto etiqueta alguna, sino que ha ido aprendiendo mientras la conoc\u00eda el mejor modo de ense\u00f1arle seg\u00fan sus capacidades.<\/p>\n<p>La sorpresa del Congreso, incluso para los organizadores, es que la propia Mar\u00eda, su hija de 11 a\u00f1os con S\u00edndrome de CHARGE y presente durante la mesa redonda, coge el micr\u00f3fono sin pens\u00e1rselo mucho y, con gran desparpajo, da las gracias a las ponentes por todo lo que le est\u00e1n ense\u00f1ando en su vida.<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AqKkutEJFhBu8Ocr3TXkOOaB2RffaYnWWR3iqpue49TW.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-1384\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AqKkutEJFhBu8Ocr3TXkOOaB2RffaYnWWR3iqpue49TW-1024x768.jpg\" alt=\"AqKkutEJFhBu8Ocr3TXkOOaB2RffaYnWWR3iqpue49TW\" width=\"1024\" height=\"768\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AqKkutEJFhBu8Ocr3TXkOOaB2RffaYnWWR3iqpue49TW-1024x768.jpg 1024w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AqKkutEJFhBu8Ocr3TXkOOaB2RffaYnWWR3iqpue49TW-300x225.jpg 300w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/AqKkutEJFhBu8Ocr3TXkOOaB2RffaYnWWR3iqpue49TW.jpg 1600w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>Para entonces, m\u00e1s de uno ha dejado caer alguna l\u00e1grima, mientras otros han tenido que salir corriendo para ponerse en camino, pues les espera un viaje de vuelta a casa largo y con muchas ideas para reflexionar.<\/p>\n<p>Pero lo m\u00e1s importante, todos nos vamos con la ilusi\u00f3n renovada para seguir luchando por nuestros ni\u00f1os, porque, sin duda alguna\u2026 \u00a1merece la pena!<\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/20151006123719.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large wp-image-1389\" src=\"http:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/20151006123719-1024x768.jpg\" alt=\"20151006123719\" width=\"1024\" height=\"768\" srcset=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/20151006123719-1024x768.jpg 1024w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/20151006123719-300x225.jpg 300w, https:\/\/sindromecharge.es\/wp-content\/uploads\/2015\/10\/20151006123719.jpg 1600w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Pamplona, s\u00e1bado 3 de Octubre de 2015. Arranca el d\u00eda con un sol fant\u00e1stico, no sabemos exactamente que tipo de ritual m\u00e1gico han hecho los organizadores del congreso para conseguirlo pero\u00a0de verdad que\u00a0les ha salido un d\u00eda espectacular. Nos acercamos hasta el museo\u00a0\u00a0Universidad de Navarra, que ser\u00e1 la sede de este congreso, para recibir las [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1303,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[109,103,108,101],"tags":[12,9,91,110],"class_list":["post-1361","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-asociacion","category-charge","category-congreso","category-eventos","tag-charge","tag-congreso","tag-congreso-charge","tag-pamplona"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Cr\u00f3nica: IV Congreso S\u00edndrome CHARGE.<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sindromecharge.es\/index.php\/2015\/10\/13\/cronica-iv-congreso-sindrome-charge\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Cr\u00f3nica: IV Congreso S\u00edndrome CHARGE.\" \/>\n<meta property=\"og:description\" content=\"Pamplona, s\u00e1bado 3 de Octubre de 2015. Arranca el d\u00eda con un sol fant\u00e1stico, no sabemos exactamente que tipo de ritual m\u00e1gico han hecho los organizadores del congreso para conseguirlo pero\u00a0de verdad que\u00a0les ha salido un d\u00eda espectacular. 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