{"id":419,"date":"2015-03-12T21:50:04","date_gmt":"2015-03-13T02:50:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=312"},"modified":"2015-03-12T21:50:04","modified_gmt":"2015-03-13T02:50:04","slug":"donavon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","title":{"rendered":"INDIVIDUO CON LGMD: Donavon"},"content":{"rendered":"

03\/12\/2015:<\/p>\n

Nombre<\/strong>: Donavon\u00a0 Edad<\/strong>: 52\"LGMD2D<\/a><\/p>\n

Pa\u00eds<\/strong>: Estados Unidos<\/p>\n

Subtipo LGMD<\/strong>: LGMD2D<\/p>\n

\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>:<\/p>\n

Me diagnosticaron a los 16 a\u00f1os<\/p>\n

\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n

Nunca fui capaz de correr muy r\u00e1pido y ten\u00eda problemas para subir escaleras. Viv\u00edamos parte del tiempo en una granja y cuando hab\u00eda que hacer las tareas dom\u00e9sticas no era capaz de levantar un saco lleno de pienso.<\/p>\n

\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n

S\u00ed, tengo cuatro hermanas y dos sobrinas con LGMD.<\/p>\n

\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\n

Toda la ayuda que he necesitado a lo largo de los a\u00f1os y sigue siendo m\u00e1s cada a\u00f1o. Estoy muy agradecido a mi gran esposa y a los grandes amigos que me han ayudado a lo largo de los a\u00f1os. Mi hermana Monica falleci\u00f3 en 2012 por complicaciones de la LGMD, as\u00ed que tengo presente que me estoy debilitando.<\/p>\n

\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n

Ser la primera persona en recibir terapia g\u00e9nica para la distrofia muscular. Llam\u00e9 a un m\u00e9dico todos los meses despu\u00e9s de que identificaran mi defecto gen\u00e9tico y cuando iban a empezar el primer ensayo me ofrec\u00ed voluntaria. La terapia g\u00e9nica me abri\u00f3 muchas oportunidades, ya que testifiqu\u00e9 en el Senado de los Estados Unidos. Ayud\u00e9 a presionar para que se aprobara la primera Ley de Atenci\u00f3n M\u00e9dica en Washington DC. Tambi\u00e9n form\u00e9 parte de un comit\u00e9 de supervisi\u00f3n de los Institutos Nacionales de Salud durante seis a\u00f1os.<\/p>\n

\u00bfC\u00f3mo te ha influido la LGMD para convertirte en la persona que eres hoy?<\/strong>:<\/strong><\/p>\n

Debido a mi LGMD creo que he tenido que luchar m\u00e1s para conseguir trabajo... algunas personas oyen que tengo distrofia muscular o me ven en una silla de ruedas y piensan que no soy capaz de hacer nada. Como resultado, he desarrollado un enfoque muy decidido y optimista en muchos aspectos de mi vida. Veo a otras personas discapacitadas de forma diferente porque conozco algunas de las dificultades a las que se enfrentan a diario. Estoy agradecido de ser cristiano, porque alg\u00fan d\u00eda, si no hay una cura en vida, no habr\u00e1 enfermedades en el Cielo.<\/p>\n

\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n

Creo que estamos muy cerca de un tratamiento o una cura. Particip\u00e9 en el primer ensayo de terapia g\u00e9nica en 1999 y estoy muy ilusionado con el inicio del pr\u00f3ximo ensayo de terapia g\u00e9nica, en el que se utilizar\u00e1 el sistema sangu\u00edneo para administrar el nuevo vector.<\/p>\n

Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/p>\n

Conducir un coche o una camioneta en lugar de una furgoneta. Alg\u00fan d\u00eda me gustar\u00eda tener otro Pontiac GTO.<\/p>","protected":false},"excerpt":{"rendered":"

03\/12\/2015: Name: Donavon\u00a0 Age: 52 Country: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":313,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[29,16],"class_list":["post-419","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Donavon<\/title>\n<meta name=\"description\" content=\"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - Donavon\" \/>\n<meta property=\"og:description\" content=\"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"article:published_time\" content=\"2015-03-13T02:50:04+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/06\/LGMD-Logo_1200X630.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"630\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"dooley\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"dooley\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/\"},\"author\":{\"name\":\"dooley\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\"},\"headline\":\"INDIVIDUAL WITH LGMD: Donavon\",\"datePublished\":\"2015-03-13T02:50:04+00:00\",\"dateModified\":\"2015-03-13T02:50:04+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/\"},\"wordCount\":465,\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#primaryimage\"},\"thumbnailUrl\":\"\",\"keywords\":[\"LGMD2D\",\"United States\"],\"articleSection\":[\"Individuals with LGMD - Interviews\",\"LGMD2D\"],\"inLanguage\":\"es-MX\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/\",\"url\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/\",\"name\":\"LGMD Spotlight Interview - Donavon\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#primaryimage\"},\"thumbnailUrl\":\"\",\"datePublished\":\"2015-03-13T02:50:04+00:00\",\"dateModified\":\"2015-03-13T02:50:04+00:00\",\"description\":\"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\",\"breadcrumb\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#breadcrumb\"},\"inLanguage\":\"es-MX\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"es-MX\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#primaryimage\",\"url\":\"\",\"contentUrl\":\"\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.lgmd-info.org\/de\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"INDIVIDUAL WITH LGMD: Donavon\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#website\",\"url\":\"https:\/\/www.lgmd-info.org\/de\/\",\"name\":\"LGMD Awareness Foundation\",\"description\":\"Information Hub for the LGMD community\",\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.lgmd-info.org\/de\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"es-MX\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\",\"name\":\"LGMD Awareness Foundation, Inc.\",\"url\":\"https:\/\/www.lgmd-info.org\/de\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es-MX\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png\",\"contentUrl\":\"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png\",\"width\":208,\"height\":61,\"caption\":\"LGMD Awareness Foundation, Inc.\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/\"},\"sameAs\":[\"https:\/\/www.facebook.com\/LGMDawareness\/\",\"https:\/\/x.com\/LgmdAwareness\",\"https:\/\/www.instagram.com\/lgmdawareness\/\"]},{\"@type\":\"Person\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\",\"name\":\"dooley\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"es-MX\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/c87b3b784fd4c1975884b6c3eab282b5?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/c87b3b784fd4c1975884b6c3eab282b5?s=96&d=mm&r=g\",\"caption\":\"dooley\"},\"sameAs\":[\"https:\/\/live-lgmd-2021.pantheonsite.io\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"LGMD Spotlight Interview - Donavon","description":"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","og_locale":"es_MX","og_type":"article","og_title":"LGMD Spotlight Interview - Donavon","og_description":"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.","og_url":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","og_site_name":"LGMD Awareness Foundation","article_publisher":"https:\/\/www.facebook.com\/LGMDawareness\/","article_published_time":"2015-03-13T02:50:04+00:00","og_image":[{"width":1200,"height":630,"url":"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/06\/LGMD-Logo_1200X630.png","type":"image\/png"}],"author":"dooley","twitter_card":"summary_large_image","twitter_creator":"@LgmdAwareness","twitter_site":"@LgmdAwareness","twitter_misc":{"Written by":"dooley","Est. reading time":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#article","isPartOf":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/"},"author":{"name":"dooley","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7"},"headline":"INDIVIDUAL WITH LGMD: Donavon","datePublished":"2015-03-13T02:50:04+00:00","dateModified":"2015-03-13T02:50:04+00:00","mainEntityOfPage":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/"},"wordCount":465,"publisher":{"@id":"https:\/\/www.lgmd-info.org\/de\/#organization"},"image":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#primaryimage"},"thumbnailUrl":"","keywords":["LGMD2D","United States"],"articleSection":["Individuals with LGMD - Interviews","LGMD2D"],"inLanguage":"es-MX"},{"@type":"WebPage","@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","url":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","name":"LGMD Spotlight Interview - Donavon","isPartOf":{"@id":"https:\/\/www.lgmd-info.org\/de\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#primaryimage"},"image":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#primaryimage"},"thumbnailUrl":"","datePublished":"2015-03-13T02:50:04+00:00","dateModified":"2015-03-13T02:50:04+00:00","description":"Donavon, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.","breadcrumb":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#breadcrumb"},"inLanguage":"es-MX","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/"]}]},{"@type":"ImageObject","inLanguage":"es-MX","@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#primaryimage","url":"","contentUrl":""},{"@type":"BreadcrumbList","@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.lgmd-info.org\/de\/"},{"@type":"ListItem","position":2,"name":"INDIVIDUAL WITH LGMD: Donavon"}]},{"@type":"WebSite","@id":"https:\/\/www.lgmd-info.org\/de\/#website","url":"https:\/\/www.lgmd-info.org\/de\/","name":"LGMD Awareness Foundation","description":"Information Hub for the LGMD community","publisher":{"@id":"https:\/\/www.lgmd-info.org\/de\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.lgmd-info.org\/de\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"es-MX"},{"@type":"Organization","@id":"https:\/\/www.lgmd-info.org\/de\/#organization","name":"LGMD Awareness Foundation, Inc.","url":"https:\/\/www.lgmd-info.org\/de\/","logo":{"@type":"ImageObject","inLanguage":"es-MX","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/","url":"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png","contentUrl":"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png","width":208,"height":61,"caption":"LGMD Awareness Foundation, Inc."},"image":{"@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/LGMDawareness\/","https:\/\/x.com\/LgmdAwareness","https:\/\/www.instagram.com\/lgmdawareness\/"]},{"@type":"Person","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7","name":"dooley","image":{"@type":"ImageObject","inLanguage":"es-MX","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/c87b3b784fd4c1975884b6c3eab282b5?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/c87b3b784fd4c1975884b6c3eab282b5?s=96&d=mm&r=g","caption":"dooley"},"sameAs":["https:\/\/live-lgmd-2021.pantheonsite.io"]}]}},"_links":{"self":[{"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/posts\/419","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/comments?post=419"}],"version-history":[{"count":0,"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/posts\/419\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/"}],"wp:attachment":[{"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/media?parent=419"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/categories?post=419"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.lgmd-info.org\/es\/wp-json\/wp\/v2\/tags?post=419"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}