{"id":2571,"date":"2022-10-20T10:05:37","date_gmt":"2022-10-20T10:05:37","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/10\/20\/esperanza-cerveza-investigacion-ataxia-telangiectasia\/"},"modified":"2026-03-02T12:00:51","modified_gmt":"2026-03-02T12:00:51","slug":"esperanza-cerveza-investigacion-ataxia-telangiectasia","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2022\/10\/20\/esperanza-cerveza-investigacion-ataxia-telangiectasia\/","title":{"rendered":"Nace \u00abEsperanza\u00bb, la cerveza que apoya la investigaci\u00f3n de la ataxia telangiectasia"},"content":{"rendered":"

\"Grupo<\/p>\n

La nueva cerveza artesana solidaria \u201cEsperanza\u201d, a beneficio de la investigaci\u00f3n de la ataxia telangiectasia, se present\u00f3 ayer en Palacio Marqueses de la Algaba de Sevilla<\/strong>, con la asistencia de familias afectadas, representantes institucionales, empresas implicadas y colaboradores.<\/p>\n

Este proyecto solidario<\/strong> naci\u00f3 gracias a la amistad entre Adri\u00e1n Mompao, padre de Emma, una ni\u00f1a sevillana de tres a\u00f1os con esta enfermedad ultra rara, y Daniel Guti\u00e9rrez, fundador de la empresa Cervezan\u00eda<\/strong><\/a>. <\/strong>\u201cSomos amigos desde peque\u00f1os, y nuestras familias tambi\u00e9n, _explic\u00f3 Guti\u00e9rrez al inicio_ y cuando me cont\u00f3 hace poco el diagn\u00f3stico, pensamos en crear alg\u00fan proyecto solidario para poder ayudar a recaudar fondos para la investigaci\u00f3n\u201d.<\/p>\n

La cerveza ya est\u00e1 en venta<\/strong> online a trav\u00e9s de la web de Cervezan\u00eda<\/a>, se est\u00e1 comercializando en toda Espa\u00f1a y pronto se lanzar\u00e1 tambi\u00e9n en el canal horeca<\/strong> (hoteles, restaurantes y cafeter\u00edas). Todos los beneficios de la venta ser\u00e1n destinados \u00edntegramente a la investigaci\u00f3n de esta enfermedad gen\u00e9tica y neurodegenerativa que a\u00fan no tiene cura ni tratamiento.<\/p>\n

Tal como explic\u00f3 Dani Guti\u00e9rrez, \u201cpara lanzar la cerveza Esperanza hablamos con Guadalquibeer y nos ofreci\u00f3 su mejor cerveza, la Guadalquibeer Sevilla<\/strong>, una cerveza estilo cream ale<\/em>, premiada en distintos eventos\u201d. La cerveza consigui\u00f3 hace poco m\u00e1s de una semana el Bronce en el Concurso Internacional de Cervezas Artesanas (CICA) celebrado en Madrid, y obtuvo el Oro en el Barcelona Beer Challenge 2022, donde 60 jueces cataron m\u00e1s de 1.300 cervezas procedentes de m\u00e1s de 200 cerveceras de todo el mundo.<\/p>\n

\"esperanzaEsperanza es una cerveza artesana rubia<\/strong>, \u201cf\u00e1cil de beber, para todos los p\u00fablicos, elaborada con los mejores ingredientes, sin gluten, sin aditivos, conservantes, antioxidantes ni estabilizantes. Una cerveza sostenible, producida con energ\u00eda limpia y renovable, con autoconsumo fotovoltaico\u201d.<\/p>\n

EMPRESAS E INSTITUCIONES QUE APOYAN<\/strong><\/span><\/h3>\n

Tambi\u00e9n asistieron a la presentaci\u00f3n representantes de las empresas sevillanas que est\u00e1n apoyando el proyecto como <\/strong>Guadalquibeer<\/strong><\/a>, Interveza, <\/strong>Grafocsur<\/strong><\/a>, <\/strong><\/a>Etisur<\/strong><\/a> y <\/strong>Clubideo<\/strong><\/a>, <\/strong>adem\u00e1s de la empresa de escaparatismo Zona Viva<\/strong><\/a>.<\/strong><\/p>\n

Patxi Vill\u00e9n, <\/strong>presidente de Aefat<\/a>, la asociaci\u00f3n que agrupa a las familias de ni\u00f1os y j\u00f3venes afectados en Espa\u00f1a, estuvo presente con su hijo, adem\u00e1s de otras familias y afectados procedentes de M\u00e1laga, Valencia y del mismo Sevilla. Tal como se\u00f1al\u00f3 Vill\u00e9n, \u201cestamos muy agradecidos con Cervezan\u00eda y todos los que se han implicado para sacar adelante este proyecto solidario, y los que nos han acompa\u00f1ado en esta presentaci\u00f3n. Realmente nos dan esperanza en encontrar una cura. Y valoramos enormemente el esfuerzo que est\u00e1n haciendo en Sevilla las familias de Emma y Ana, como otras reci\u00e9n diagnosticadas con ataxia telangiectasia, por su empuje y su visi\u00f3n positiva, porque muchas veces es dif\u00edcil pasar a la acci\u00f3n cuando tienes un diagn\u00f3stico tan duro, y ellos no han parado de pensar en cosas para ayudar\u201d.<\/p>\n

\"Presentaci\u00f3n<\/p>\n

Adri\u00e1n Mompao<\/strong>, padre de Emma, explic\u00f3 su experiencia y sus ganas de luchar. \u201cComo sucede con cualquier enfermedad rara, al final somos las familias las que nos tenemos que mover, porque con pocos afectados no te hace caso nadie, y es injusto, una loter\u00eda que te ha tocado a ti, y tienes que luchar para que tu hija tenga educaci\u00f3n, asistencia sanitaria, inclusi\u00f3n e investigaci\u00f3n como los dem\u00e1s\u201d.<\/p>\n

Mar\u00eda Encarnaci\u00f3n Aguilar<\/strong>, teniente de alcalde delegada del \u00c1rea de Salud y Protecci\u00f3n Animal del Ayuntamiento de Sevilla, presidi\u00f3 el acto y destac\u00f3 el compromiso del consistorio sevillano con el apoyo a los afectados por enfermedades raras. Diego Rodr\u00edguez Fern\u00e1ndez<\/strong>, ex futbolista y ex entrenador que ha jugado en clubes como el Sevilla y el Betis, amigo de la familia de Emma, fue el \u201cpadrino\u201d del evento.<\/p>\n

\"Patxi<\/p>\n

\"Presentaci\u00f3n<\/p>\n

Aefat cont\u00f3 tambi\u00e9n con el apoyo de FEDER<\/strong>, la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras, con la presencia de Carmen Moreno, vocal de su Junta Directiva. Y tambi\u00e9n asistieron Jos\u00e9 Luis Ramos e Irene Dominguez, directivos de Zurich<\/strong>, empresa que apoya a Aefat desde 2017 fomentando la participaci\u00f3n de los ni\u00f1os y j\u00f3venes afectados con ataxia telangiectasia en las maratones patrocinadas por la compa\u00f1\u00eda aseguradora (Sevilla, Barcelona, San Sebasti\u00e1n, y ahora tambi\u00e9n Valencia y Madrid).<\/p>\n

LA ATAXIA TELANGIECTASIA Y AEFAT<\/span><\/h3>\n

La ataxia telangiectasia<\/strong><\/a> es uno de los 300 tipos de ataxia que existen. Provoca una grave discapacidad f\u00edsica progresiva (hacia los 8-10 a\u00f1os necesitan silla de ruedas), inmunodeficiencia y m\u00e1s riesgo de c\u00e1ncer, entre otras complicaciones. Afecta a cinco ni\u00f1os y j\u00f3venes en la provincia de Sevilla, y a casi 40 en Espa\u00f1a.<\/p>\n

Aefat<\/strong> es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y Declarada de Utilidad P\u00fablica desde 2014. Financia varios proyectos de investigaci\u00f3n<\/a> nacionales e internacionales, y busca mejorar la calidad de vida de los afectados y sus familias. Pertenece a FEDER (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras), FEDAES (Federaci\u00f3n de Ataxias de Espa\u00f1a) y a la entidad internacional A-T Global Alliance (www.cureat.org<\/a>).<\/p>\n","protected":false},"excerpt":{"rendered":"

\"Grupo<\/p>\n

La nueva cerveza artesana solidaria \u201cEsperanza\u201d, a beneficio de la investigaci\u00f3n de la ataxia telangiectasia, se present\u00f3 ayer en Palacio Marqueses de la Algaba de Sevilla<\/strong>, con la asistencia de familias afectadas, representantes institucionales, empresas implicadas y colaboradores.<\/p>\n","protected":false},"author":1,"featured_media":2566,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[813],"tags":[60,55,58,531,535,537,533,536,144,62,61,187],"class_list":["post-2571","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-campanas-y-financiacion","tag-aefat","tag-ataxia-telangiectasia","tag-cadiz","tag-cerveza","tag-cerveza-artesana","tag-cerveza-esperanza","tag-cerveza-solidaria","tag-cervezania","tag-diario-de-cadiz","tag-enfermedades-raras","tag-german","tag-triatlon-bmw-puerto-sherry"],"acf":[],"yoast_head":"\nNace "Esperanza", la cerveza que apoya la investigaci\u00f3n de la ataxia telangiectasia - 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 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