{"id":2188,"date":"2019-07-01T09:08:45","date_gmt":"2019-07-01T09:08:45","guid":{"rendered":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/07\/01\/calcetines-solidarios-san-fermin-a-beneficio-ataxia-telangiectasia\/"},"modified":"2026-03-02T12:02:01","modified_gmt":"2026-03-02T12:02:01","slug":"calcetines-solidarios-san-fermin-a-beneficio-ataxia-telangiectasia","status":"publish","type":"post","link":"https:\/\/exciting-elbakyan.137-74-93-36.plesk.page\/index.php\/2019\/07\/01\/calcetines-solidarios-san-fermin-a-beneficio-ataxia-telangiectasia\/","title":{"rendered":"Calcetines solidarios para San Ferm\u00edn, a beneficio de la investigaci\u00f3n de la ataxia telangiectasia"},"content":{"rendered":"

\"Para
<\/strong><\/p>\n

La iniciativa parti\u00f3 de SpiderAbel, corredor solidario que colabora en maratones con Aefat, la asociaci\u00f3n de familias con afectados por esta enfermedad rara y neurodegenerativa, y la marca Prendalia<\/strong><\/p>\n

Mil calcetines solidarios, de rojo y blanco, se vender\u00e1n en distintos comercios de Pamplona, Vitoria-Gasteiz y Logro\u00f1o durante estos d\u00edas, y tambi\u00e9n online en https:\/\/longfield.es\/longfield\/calcetines-solidarios\/<\/a>.<\/p>\n

De esta forma, cualquiera podr\u00e1 colaborar en esta iniciativa solidaria para contribuir a la investigaci\u00f3n de la ataxia telangiectasia<\/strong>, una enfermedad neurodegenerativa que afecta a unos 30 ni\u00f1os y j\u00f3venes en Espa\u00f1a. El \u00fanico proyecto de investigaci\u00f3n que se desarrolla en la actualidad en territorio espa\u00f1ol relacionado con esta enfermedad rara es el que Aefat<\/strong><\/a>, la asociaci\u00f3n de familias afectadas, financiamos en la Cl\u00ednica Universidad de Navarra<\/a> hasta el 2021 y que alcanza los 150.000 euros.<\/p>\n

Esta iniciativa solidaria surgi\u00f3 de SpiderAbel<\/strong>, un corredor solidario de Amurrio (\u00c1lava) que colabora desde hace tiempo con Aefat y es habitual de los Sanfermines, junto con la marca logro\u00f1esa Prendalia<\/strong><\/a>, dedicada a la personalizaci\u00f3n de prendas y especialista en prendas deportivas con las marcas Longfield<\/strong><\/a> (calcetines deportivos, especialmente para corredores) y Pimiento Negro<\/strong><\/a> (prendas para ciclismo).<\/p>\n

Abel Fern\u00e1ndez Mendivil, que corre siempre disfrazado de Spiderman y que colabora empujando las sillas de los ni\u00f1os afectados en las maratones, ide\u00f3 con los responsables de Prendalia la creaci\u00f3n de estos calcetines solidarios. En pocos d\u00edas, realizaron tres dise\u00f1os diferentes, con rayas, puntos y lazos imitando a las tradicionales alpargatas. El precio ser\u00e1 de 4 euros<\/strong> y estar\u00e1n disponibles en dos tallas<\/strong> (36-40 y 41-45). El 25 % de la recaudaci\u00f3n de la venta de estos calcetines se destinar\u00e1 a Aefat.<\/p>\n

Estos calcetines deportivos solidarios, que lucen impresa la web de Aefat (www.aefat.es<\/a>) para colaborar en la difusi\u00f3n de la ataxia telangiectasia, se comercializan a trav\u00e9s de internet, en la web https:\/\/longfield.es\/longfield\/calcetines-solidarios\/<\/a> y de momento tambi\u00e9n en diversos comercios de Pamplona, Vitoria-Gasteiz y Logro\u00f1o<\/strong> que han querido apoyar esta causa:<\/p>\n

\u00b7 NAVARRA:<\/p>\n

                      \u00b7 Anc\u00edn Joyer\u00eda Relojer\u00eda<\/a><\/span> (Calle Zapater\u00eda, 4 Pamplona\/Iru\u00f1a). Tel. 948 224 972<\/a><\/span><\/p>\n

                      \u00b7 Al norte del sur Caf\u00e9<\/a><\/span> (Plaza Consistorial, 5<\/span>, 31010<\/span>, Pamplona\/Iru\u00f1a<\/span><\/a>. Tel. 601 31 22 97<\/span><\/span><\/p>\n

                      \u00b7 Geltoki<\/span> <\/a>(Av. Conde Oliveto, 6 Pamplona\/Iru\u00f1a). Tel. 948 98 82 74<\/a><\/span><\/p>\n

                      \u00b7 \u00c9bano<\/span>– Tienda de regalos<\/a> (Calle Mercaderes, 25, 31001 Pamplona\/Iru\u00f1a). Tel. 948 22 23 89<\/a><\/span><\/p>\n

                      \u00b7 La curva de Estafeta<\/span> (Calle Mercaderes, 23 Pamplona\/Iru\u00f1a). Tel. 638 16 94 67<\/p>\n

                      \u00b7 Hotel Villava<\/a><\/span> (Avda. de Pamplona 2, Villava, Navarra). Tel. 948 33 36 76 <\/p>\n

                      \u00b7 Restaurante Elordi<\/a><\/span> (Pol\u00edgono Ezcabarte, Nave K 17, 13194 Arre – Navarra). Tel. 948 330 098<\/span><\/p>\n

                      \u00b7 Bar \u00abLas Vegas<\/a>\u00ab<\/span> (Calle Rosario, 1 Sartaguda, Navarra). Tel. 948 66 70 44<\/a><\/span><\/p>\n

\u00b7 LOGRO\u00d1O:<\/p>\n

                      \u00b7 Cervecer\u00eda El Dorado<\/span><\/a> (Portales 81, Logro\u00f1o). Tel. 941 22 69 00<\/a><\/span><\/p>\n

                      \u00b7 Maule\u00f3n 2<\/a><\/span> (Plaza Ferm\u00edn Gurbindo, 2 Logro\u00f1o). Tel. 941 24 47 52<\/a><\/span><\/p>\n

\u00b7 VITORIA-GASTEIZ: <\/p>\n

                      \u00b7 RunningFIZ <\/a><\/span>(C\/ Portal de Castilla, 45 Vitoria-Gasteiz)<\/p>\n

   (\u00a1Muchas gracias a todos por colaborar! … Iremos actualizando esta lista).<\/p>\n

SpiderAbel<\/strong>, que tambi\u00e9n ha colaborado en otras acciones solidarias de la asociaci\u00f3n, ha corrido con el equipo de Aefat en m\u00e1s de ocho maratones en los \u00faltimos dos a\u00f1os, entre ellas la de M\u00e1laga, Barcelona, Sevilla y Donostia\/San Sebasti\u00e1n, con el apoyo de Zurich, y en otras carreras como la Marat\u00f3n Fiz (Vitoria-Gasteiz). Aefat participa en este tipo de actividades deportivas para motivar a los afectados, dar visibilidad a la enfermedad, sensibilizar a la sociedad ante las enfermedades raras y la necesidad de inclusi\u00f3n, y para recaudar fondos para la investigaci\u00f3n.<\/p>\n

Tal como ha explicado Patxi Vill\u00e9n, presidente de A<\/strong>efat y padre de Jon, de 16 a\u00f1os, \u201cgracias a iniciativas solidarias como estas, una asociaci\u00f3n peque\u00f1a como la nuestra puede financiar una investigaci\u00f3n para buscar una cura para esta enfermedad o al menos un tratamiento que mejore su calidad de vida. As\u00ed que estamos muy agradecidos a Abel, que siempre colabora con nosotros, y al equipo de Prendalia\u201d.<\/p>\n

Aefat<\/strong> es una asociaci\u00f3n sin \u00e1nimo de lucro creada en 2009 y declarada de utilidad p\u00fablica desde 2014, que pertenece a FEDER (Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras) y FEDAES (Federaci\u00f3n de Ataxias de Espa\u00f1a). Aefat est\u00e1 formada por unas 30 familias con afectados por ataxia telangiectasia de diferentes puntos de Espa\u00f1a, entre ellos dos ni\u00f1os en el Pa\u00eds Vasco.<\/p>\n

La ataxia telangiectasia (AT) <\/strong>es una enfermedad minoritaria, gen\u00e9tica y neurodegenerativa, compleja de diagnosticar, que se manifiesta habitualmente antes de los dos a\u00f1os de edad. Es multisist\u00e9mica y discapacitante, afecta a las funciones de diferentes \u00f3rganos y provoca incapacidad de coordinar movimientos, p\u00e9rdida progresiva de movilidad (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 respiratorias, m\u00e1s prevalencia de tumores… Los afectados son plenamente conscientes de su enfermedad y de su discapacidad f\u00edsica progresiva.<\/p>\n

 <\/p>\n

\"Aefat<\/p>\n

\"Para<\/p>\n

\"Para<\/p>\n

\"Para<\/p>\n

\"Para<\/p>\n

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

\"Para
<\/strong><\/p>\n

La iniciativa parti\u00f3 de SpiderAbel, corredor solidario que colabora en maratones con Aefat, la asociaci\u00f3n de familias con afectados por esta enfermedad rara y neurodegenerativa, y la marca Prendalia<\/strong><\/p>\n

Mil calcetines solidarios, de rojo y blanco, se vender\u00e1n en distintos comercios de Pamplona, Vitoria-Gasteiz y Logro\u00f1o durante estos d\u00edas, y tambi\u00e9n online en https:\/\/longfield.es\/longfield\/calcetines-solidarios\/<\/a>.<\/p>\n","protected":false},"author":1,"featured_media":2181,"comment_status":"closed","ping_status":"open","sticky":true,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[813],"tags":[60,278,114,297,306,305,310,311,309,298,304,307,62,116,300,303,302,182,299,25,308,69,296,301,126],"class_list":["post-2188","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-campanas-y-financiacion","tag-aefat","tag-ataxia-telangientasia","tag-beca","tag-calcetines","tag-calcetines-de-deporte","tag-calcetines-deportivos","tag-calcetines-para-ciclismo","tag-calcetines-para-correr","tag-calcetines-para-running","tag-calcetines-solidarios","tag-clinica-universidad-de-navarra","tag-deporte-solidario","tag-enfermedades-raras","tag-investigacion","tag-longfield","tag-navarra","tag-pamplona","tag-portal-local","tag-prendalia","tag-reto-solidario","tag-runner-solidario","tag-running","tag-san-fermin","tag-sanfermines","tag-tapones-solidarios"],"acf":[],"yoast_head":"\nCalcetines 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