{"id":2646,"date":"2023-03-24T12:56:06","date_gmt":"2023-03-24T12:56:06","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2023\/03\/24\/fira-salut-burjassot-valencia\/"},"modified":"2026-03-03T11:33:37","modified_gmt":"2026-03-03T11:33:37","slug":"fira-salut-burjassot-valencia","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2023\/03\/24\/fira-salut-burjassot-valencia\/","title":{"rendered":"Participamos en la II Fira de la Salut de Burjassot (Valencia)"},"content":{"rendered":"

\"FERIAEl s\u00e1bado 25 de marzo participamos en la II Fira de la Salut de Burjassot (Valencia) con un stand que fue atendido por Lorena, madre de Cloe, nuestra peque valenciana, y otras voluntarias. All\u00ed ofrecieron informaci\u00f3n sobre la ataxia telangiectasia y Aefat.<\/p>\n

Adem\u00e1s, las voluntarias organizaron una actividad gratuita de \u00abpintacaras<\/strong>\u00bb a las 10 de la ma\u00f1ana y otra de \u00abcuentacuentos<\/strong>\u00bb a las 12 h. Y durante toda la ma\u00f1ana se ofreci\u00f3 a los ni\u00f1os y ni\u00f1as asistentes participar en un juego de<\/strong> sensibilizaci\u00f3n educativa<\/strong>: que sientan en su propia piel algunas de las dificultades f\u00edsicas que tienen los peque\u00f1os que conviven con esta enfermedad rara como la falta de equilibrio al caminar, los movimientos involuntarios y las dificultades psicomotrices y de visi\u00f3n. Se regal\u00f3 una piruleta a todos los asistentes.<\/p>\n

Esta Fira <\/a>divulgativa, que se celebr\u00f3 en el Parque de La Granja<\/strong> de Burjassot (calle Pintor Goya, n\u00ba. 16) de 10:00 a 15:00 h, est\u00e1 organizada por el \u00e1rea de Sanidad del Ajuntament de Burjassot, al que agradecemos esta iniciativa. El stand de Aefat estaba situado junto a la entrada de la Casa de Cultura.  De los 40 ni\u00f1os y j\u00f3venes afectados con ataxia telangiectasia dentro de Aefat en Espa\u00f1a, tres de ellos residen en la Comunidad Valenciana.<\/p>\n

Las personas asistentes a la Feria pudieron disfrutar de animaci\u00f3n infantil y juvenil, manualidades, charlas y talleres, actividades deportivas, roc\u00f3dromo y tirolina, espect\u00e1culo de magia y muchas otras actividades.<\/p>\n

\u00a1Muchas gracias a Lorena, madre de Cloe, las voluntarias, los organizadores y los asistentes!<\/span><\/p>\n

 \"FERIA<\/p>\n

\"FERIA<\/p>\n

SOBRE LA ATAXIA TELANGIECTASIA<\/span> <\/h4>\n

\"AefatLa ataxia telangiectasia <\/strong>(AT o A-T) es uno de los 300 tipos de ataxia que existen. Es una enfermedad rara, gen\u00e9tica<\/strong>, una \u201cloter\u00eda\u201d, y neurodegenerativa. A\u00fan no tiene cura ni tratamiento. Provoca una grave discapacidad f\u00edsica progresiva, acorta la esperanza de vida y los afectados tienen mayor probabilidad de tener c\u00e1ncer. Todos los af<\/span>ectados tienen entre meses y poco m\u00e1s de 30 a\u00f1os.<\/p>\n

Se manifiesta habitualmente antes de los dos a\u00f1os de edad. Se puede detectar hacia esa edad o antes, aunque algunas familias han esperado hasta nueve a\u00f1os o m\u00e1s para tener un diagn\u00f3stico porque se confunde con otras patolog\u00edas.<\/p>\n

Afecta a las funciones de diferentes \u00f3rganos<\/strong> y provoca incapacidad de coordinar movimientos, p\u00e9rdida progresiva de movilidad<\/strong> (hacia los 9 a\u00f1os se necesita silla de ruedas), dificultad en el habla, estancamiento en el crecimiento, inmunodeficiencia, envejecimiento prematuro, dificultades para comer, problemas en la piel y en la visi\u00f3n, neumon\u00edas y otras complicaciones. La enfermedad est\u00e1 causada por una mutaci\u00f3n en el gen ATM, localizado en el cromosoma 11, y que codifica para una prote\u00edna fosfatidilinositol-3-kinasa.<\/p>\n

Los pacientes son m\u00e1s proclives a los tumores malignos<\/strong> (como los sarcomas, linfomas, leucemias…).<\/p>\n

Los enfermos son plenamente conscientes de su enfermedad<\/strong>, ya que no afecta a sus facultades mentales, pero la AT les impide realizar de forma independiente las actividades b\u00e1sicas de la vida diaria como vestirse, realizar su higiene personal, alimentarse, etc. Aun as\u00ed, no hay que olvidar que tienen capacidad para pensar, sentir, amar y, por supuesto, para ser felices.<\/p>\n

 <\/h4>\n

SOBRE AEFAT<\/span><\/h4>\n

Aefat es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y declarada de utilidad p\u00fablica desde 2014<\/strong>, que est\u00e1 formada por las familias de m\u00e1s de 40 ni\u00f1os y j\u00f3venes afectados con ataxia telangiectasia en Espa\u00f1a, y personas relacionadas. Tambi\u00e9n mantiene contacto cercano con las familias de afectados en Iberoam\u00e9rica.<\/p>\n

Aefat pertenece a FEDER<\/strong> (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras), FEDAES<\/strong> (Federaci\u00f3n de Ataxias de Espa\u00f1a) y la entidad internacional A-T Global Alliance<\/strong> (www.cureat.org<\/a>).<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

\"FERIAEl s\u00e1bado 25 de marzo participamos en la II Fira de la Salut de Burjassot (Valencia) con un stand que fue atendido por Lorena, madre de Cloe, nuestra peque valenciana, y otras voluntarias. All\u00ed ofrecieron informaci\u00f3n sobre la ataxia telangiectasia y Aefat.<\/p>\n","protected":false},"author":1,"featured_media":2642,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[51],"tags":[60,604,278,593,603,216,600,123,62,125,595,594,596,599,64,602,598,597,124,601,542,166],"class_list":["post-2646","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actividades-solidarias","tag-aefat","tag-asociacion","tag-ataxia-telangientasia","tag-burjassot","tag-cuentacuentos","tag-diario-vasco","tag-divulgacion","tag-donostia","tag-enfermedades-raras","tag-equipo-zurich-at","tag-feria","tag-fira","tag-fira-de-la-salut-de-burjassot","tag-la-granja","tag-maraton","tag-pintacaras","tag-salud","tag-salut","tag-san-sebastian","tag-sensibilizacion-educativa","tag-valencia","tag-zurich-maraton"],"acf":[],"yoast_head":"\nParticipamos en la II Fira de la Salut de Burjassot (Valencia) - Aefat<\/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=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Participamos en la II Fira de la Salut de Burjassot (Valencia) - Aefat\" \/>\n<meta property=\"og:description\" content=\"El s\u00e1bado 25 de marzo participamos en la II Fira de la Salut de Burjassot (Valencia) con un stand que fue atendido por Lorena, madre de Cloe, nuestra peque valenciana, y otras voluntarias. 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