{"id":1798,"date":"2018-04-15T12:03:25","date_gmt":"2018-04-15T17:03:25","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1798"},"modified":"2018-04-15T12:03:25","modified_gmt":"2018-04-15T17:03:25","slug":"coalition-to-cure-calpain-3","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/lgmd2a\/2018\/04\/15\/coalition-to-cure-calpain-3\/","title":{"rendered":"ORGANIZACI\u00d3N: Coalition to Cure Calpain 3"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27960%27%20height%3D%27720%27%20viewBox%3D%270%200%20960%20720%27%3E%3Crect%20width%3D%27960%27%20height%3D%27720%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/10\/Coalition-to-Cure-Calpain-3-v2.png\" alt=\"\" class=\"lazyload wp-image-2874\"\/><\/figure>\n\n\n<p><strong>NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>:         Coalici\u00f3n para Curar la Calpa\u00edna 3<\/p>\n<p><strong>P\u00c1GINA WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <a href=\"http:\/\/www.curecalpain3.org\/\">CureCalpain3.org<\/a><\/p>\n<p><strong>FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><a href=\"https:\/\/www.facebook.com\/CureCalpain3\/\">Coalition to Cure Calpain 3: Superar la LGMD2A\/Calpainopat\u00eda<\/a><\/p>\n<p><strong>Twitter:\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0<\/strong><a href=\"https:\/\/twitter.com\/curecalpain3\">@CureCalpain3<\/a><\/p>\n<p>\u00a0<\/p>\n<p><strong>EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong><\/p>\n<p>LGMD2A, una forma de Calpainopat\u00eda<\/p>\n<p><strong>SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES? <\/strong><\/p>\n<p>S\u00ed, mantenemos el Registro mundial de pacientes de LGMD2A.  Es f\u00e1cil inscribirse en <a href=\"http:\/\/www.lgmd2a.org\">www.lgmd2a.org<\/a><\/p>\n<p><strong>\u00bfEs su organizaci\u00f3n una organizaci\u00f3n sin \u00e1nimo de lucro? En caso afirmativo, de qu\u00e9 tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>S\u00ed, somos una organizaci\u00f3n ben\u00e9fica p\u00fablica exenta de impuestos con sede en EE.UU. 501 (c)(3)<\/p>\n<p><strong>QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n<p>Coalition to Cure Calpain 3 (C3) se fund\u00f3 en 2010 con el prop\u00f3sito espec\u00edfico de financiar esfuerzos de investigaci\u00f3n centrados en comprender la biolog\u00eda y encontrar una cura para la LGMD2A, una forma de Calpainopat\u00eda. Esta organizaci\u00f3n fue creada por pacientes y sus familias que se sent\u00edan frustrados por la falta de conocimiento sobre la enfermedad y por el hecho de que se estaba investigando muy poco. Para algunos de nosotros, incluso conseguir un diagn\u00f3stico espec\u00edfico hab\u00eda llevado d\u00e9cadas.  Nos motiva nuestro deseo de fomentar la colaboraci\u00f3n entre los cient\u00edficos, las personas que padecen LGMD2A, sus familias y amigos, y la comunidad en general para poner fin a esta enfermedad \"hu\u00e9rfana\" poco investigada y financiada.<\/p>\n<p><strong>CU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>C3 se ha comprometido a tratar y, en \u00faltima instancia, curar la distrofia muscular de cinturas de extremidades tipo 2A (LGMD2A), una forma de Calpainopat\u00eda. Nuestra misi\u00f3n es financiar investigaciones y ensayos cl\u00ednicos de alto potencial mientras educamos a la comunidad mundial sobre esta enfermedad.<\/p>\n<p><strong>QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>- Financiar la investigaci\u00f3n centrada en la LGMD2A\/Calpainopat\u00eda<\/p>\n<p>- Mantener el registro mundial de pacientes de LGMD2A\/Calpainopat\u00eda.<\/p>\n<p>- Educar a la comunidad mundial (incluida la comunidad cient\u00edfica junto con los pacientes, sus familias y el p\u00fablico en general) sobre la enfermedad a trav\u00e9s de nuestra p\u00e1gina web, las redes sociales, la presencia en congresos cient\u00edficos y las comunicaciones por correo electr\u00f3nico.<\/p>\n<p>- Proporcionar un foro de apoyo a los pacientes y sus familias en Facebook (<a href=\"\/es\/carol@curecalpain3.org\/\">correo electr\u00f3nico C3 Director of Patient Outreach Carol Abraham<\/a> unirse)<\/p>\n<p><strong>DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N<\/strong><\/p>\n<p>Estamos muy orgullosos de haber sido capaces de atraer y apoyar a cient\u00edficos de gran calibre para impulsar la investigaci\u00f3n de la calpainopat\u00eda. La Dra. Melissa Spencer ha dirigido nuestro Consejo Asesor Cient\u00edfico desde nuestros inicios en 2010, trabajando junto a los doctores Kevin Campbell, Eric Hoffman y Lou Kunkel. La Dra. Jennifer Levy se uni\u00f3 a nosotros como primera Directora Cient\u00edfica de C3 en 2016 y ha duplicado con creces el n\u00famero de proyectos de investigaci\u00f3n que financiamos. El hecho de que nuestra fundaci\u00f3n, inicialmente solo una idea que tuvimos para intentar marcar la diferencia, haya destinado casi $1,5 millones de d\u00f3lares a la investigaci\u00f3n de la calpainopat\u00eda llevada a cabo por cient\u00edficos punteros -los doctores Michele Calos, Lou Kunkel, Cathleen Lutz, Rita Perlingeiro, Isabelle Richard, Melissa Spencer, Volker Straub- es algo de lo que estamos realmente orgullosos.<\/p>\n<p><strong>\u00bfQu\u00e9 quiere que el mundo sepa sobre SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n<p>Recientemente hemos lanzado una Iniciativa de Terapia G\u00e9nica que pretende acelerar la comprensi\u00f3n de la terapia g\u00e9nica como tratamiento para la LGMD2A mediante la financiaci\u00f3n de la investigaci\u00f3n de m\u00faltiples enfoques de terapia g\u00e9nica. Si los resultados de cualquiera de los proyectos de investigaci\u00f3n de la Iniciativa de Terapia G\u00e9nica actuales o futuros son positivos, pueden avanzar hacia el inicio de ensayos cl\u00ednicos para pacientes con LGMD2A. Est\u00e9 atento a nuestros anuncios a medida que sigamos financiando nuevos proyectos. <a href=\"http:\/\/www.curecalpain3.org\/research\">http:\/\/www.curecalpain3.org\/research<\/a><\/p>\n<p><strong>C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p>Llevar una terapia del laboratorio de investigaci\u00f3n a un ensayo cl\u00ednico es un proceso largo y costoso. La forma m\u00e1s importante de apoyar la misi\u00f3n de nuestra organizaci\u00f3n es hacer donaciones. Cada d\u00f3lar marca la diferencia en nuestros esfuerzos por curar esta enfermedad que destruye los m\u00fasculos.<\/p>\n<p>Los donantes pueden hacer donaciones de tres maneras:<\/p>\n<p>&#8211; <a href=\"https:\/\/donatenow.networkforgood.org\/C3\">nuestro sitio web<\/a> (en l\u00ednea)<\/p>\n<p>- nuestro <a href=\"https:\/\/www.crowdrise.com\/o\/en\/campaign\/c3-gene-therapy-initiative\/coalitiontocurecalpa\">Campa\u00f1a Crowdrise<\/a> (en l\u00ednea)<\/p>\n<p>- por correo mediante cheque (offline)<\/p>\n<p><a href=\"\/es\/info@curecalpain3.org\/\">env\u00edenos un correo electr\u00f3nico<\/a> y solicite un formulario de donaci\u00f3n o desc\u00e1rguelo en <a href=\"http:\/\/files.constantcontact.com\/fc88c999301\/4a707677-bb13-4ccf-a5a7-d75c7630cb0e.pdf\">http:\/\/files.constantcontact.com\/fc88c999301\/4a707677-bb13-4ccf-a5a7-d75c7630cb0e.pdf<\/a><\/p>\n<p><strong>CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n<p><a href=\"\/es\/info@curecalpain3.org\/\">Env\u00edenos un correo electr\u00f3nico<\/a> en <a href=\"mailto:info@curecalpain3.org\">info@curecalpain3.org<\/a>. Le responderemos.<\/p>\n<p><strong>\u00bfLE GUSTAR\u00cdA A\u00d1ADIR ALGO M\u00c1S?<\/strong><\/p>\n<p>Si sabe que padece alguna forma de distrofia muscular de cinturas de extremidades, presione para que se realicen pruebas gen\u00e9ticas que identifiquen su tipo. Todas las organizaciones de LGMD y la comunidad cient\u00edfica a\u00fan tienen mucho que aprender sobre este grupo de enfermedades, y t\u00fa puedes ayudar uni\u00e9ndote al registro de pacientes correspondiente. Busque los numerosos grupos de apoyo; no est\u00e1 solo. Sepa que estamos motivados y trabajamos cada d\u00eda para aprender m\u00e1s sobre la calpainopat\u00eda y encontrar un tratamiento o cura.<\/p>\n<p>\u00a0<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p>\u00a0<\/p>\n<p>\u00a0<\/p>","protected":false},"excerpt":{"rendered":"<p>NAME OF ORGANIZATION:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Coalition to Cure Calpain 3 WEBSITE:\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2874,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,14,95],"tags":[82],"class_list":["post-1798","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-lgmd2a","category-organization","tag-lgmd2a-calpainopathy"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>ORGANIZATION: Coalition to Cure Calpain 3 - 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