{"id":3342,"date":"2019-12-27T14:48:00","date_gmt":"2019-12-27T20:48:00","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3342"},"modified":"2021-02-19T18:34:05","modified_gmt":"2021-02-19T18:34:05","slug":"organization-cure-vcp","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/","title":{"rendered":"ORGANIZACI\u00d3N: Cure VCP Disease, Inc."},"content":{"rendered":"
\n
\"\"<\/figure>\n<\/div>\n

NOMBRE DE LA ORGANIZACI\u00d3N<\/strong>: Cure VCP Disease, Inc.<\/p>\n

P\u00c1GINA WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0https:\/\/www.curevcp.org<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> https:\/\/www.facebook.com\/curevcpdisease\/<\/a><\/p>\n

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong> @LostTexanInGA<\/p>\n

EN QU\u00c9 SUBTIPO DE LGMD SE CENTRA SU ORGANIZACI\u00d3N:\u00a0 <\/strong>\u00a0<\/p>\n

Las enfermedades VCP y, en concreto, la miopat\u00eda de cuerpos de inclusi\u00f3n asociada a la enfermedad \u00f3sea de Paget y a la demencia frontotemporal (IBMPFD).\u00a0<\/p>\n

SI SE CENTRA EN UN SUBTIPO, \u00bfEXISTE UN REGISTRO Y C\u00d3MO PUEDEN INSCRIBIRSE LOS PACIENTES?<\/strong><\/p>\n

https:\/\/www.curevcp.org\/patient-registry<\/a><\/p>\n

\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

\u00a0 S\u00ed, somos una organizaci\u00f3n p\u00fablica sin \u00e1nimo de lucro 501(c)(3)<\/p>\n

QU\u00c9 INSPIR\u00d3 LA CREACI\u00d3N DE SU ORGANIZACI\u00d3N<\/strong>:<\/p>\n

\u00a0No exist\u00eda ninguna organizaci\u00f3n formal para organizar y concienciar a pacientes e investigadores sobre las enfermedades PCV. Yo misma soy paciente y hab\u00eda perdido a mi madre a causa de la enfermedad, por lo que sent\u00ed que no pod\u00eda quedarme de brazos cruzados esperando a que ocurrieran cosas en la comunidad investigadora. Como poblaci\u00f3n de pacientes, necesit\u00e1bamos ser participantes activos para impulsar resultados positivos, pero lo m\u00e1s importante era identificar a la poblaci\u00f3n de pacientes.\u00a0<\/p>\n

CU\u00c1L ES LA MISI\u00d3N DE SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

Cure VCP Disease, Inc. se constituy\u00f3 para impulsar los esfuerzos por curar las enfermedades relacionadas con mutaciones del gen de la prote\u00edna que contiene valosina. Esto incluye la enfermedad Miopat\u00eda de cuerpos de inclusi\u00f3n asociada a la enfermedad \u00f3sea de Paget y Demencia Frontotemporal (IBMPFD). Nuestro objetivo es proporcionar educaci\u00f3n y concienciaci\u00f3n global sobre las enfermedades VCP a m\u00e9dicos, investigadores, inversores, pacientes, cuidadores y p\u00fablico en general.<\/p>\n

QU\u00c9 SERVICIOS PRESTA SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

\u00a0Mantenemos un registro mundial de pacientes de la enfermedad PCV. Proporcionamos esperanza y educaci\u00f3n a nuestra poblaci\u00f3n de pacientes a trav\u00e9s de conferencias, boletines por correo electr\u00f3nico, recursos en l\u00ednea y seminarios web.<\/p>\n

DE QU\u00c9 SE SIENTE M\u00c1S ORGULLOSA SU ORGANIZACI\u00d3N<\/strong><\/p>\n

\u00a0Arrancamos en enero de 2018 y en abril de 2019 realizamos la conferencia inaugural de pacientes y cuidadores de la enfermedad VCP. Asistieron unos 60 pacientes, cuidadores e investigadores. Todas las sesiones grabadas est\u00e1n disponibles en nuestro canal de YouTube Cure VCP Disease.<\/p>\n

\u00bfQU\u00c9 QUIERE QUE EL MUNDO SEPA DE SU ORGANIZACI\u00d3N?<\/strong>:<\/p>\n

\u00a0Muchos de nuestros pacientes son diagnosticados err\u00f3neamente de LGMD o miositis por cuerpos de inclusi\u00f3n. La b\u00fasqueda de un diagn\u00f3stico correcto puede ser estresante para muchos pacientes con enfermedades neuromusculares. Nuestro objetivo es colaborar con todas las organizaciones neuromusculares de inicio en la edad adulta para impulsar la concienciaci\u00f3n, la educaci\u00f3n y las mejores pr\u00e1cticas. Todos nos enfrentamos a muchos de los mismos retos debido a nuestras enfermedades y, aunque la ciencia de nuestras enfermedades puede ser diferente, todos tenemos que estar juntos en esto.<\/p>\n

C\u00d3MO PUEDE PARTICIPAR LA GENTE EN EL APOYO A SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

\u00a0Estamos intentando crear un programa de embajadores para llegar a los pacientes, los cuidadores y la comunidad cient\u00edfica. No conocemos la prevalencia de las enfermedades PCV e identificar a m\u00e1s pacientes es fundamental para comprender el impacto global.<\/p>\n

CU\u00c1L ES LA MEJOR MANERA DE PONERSE EN CONTACTO CON SU ORGANIZACI\u00d3N:<\/strong><\/p>\n

P\u00e1gina web, grupo de Facebook o correo electr\u00f3nico<\/p>\n

\u00bfLE GUSTAR\u00cdA A\u00d1ADIR ALGO M\u00c1S?<\/strong><\/p>\n

\u00a0La pregunta clave para diferenciar entre la enfermedad VCP y tal vez una mutaci\u00f3n LGMD es la pregunta hereditaria: \"\u00bfMuestran otros miembros de la familia debilidad muscular, enfermedad \u00f3sea y\/o demencia?\". La enfermedad de VCP es autos\u00f3mica dominante y la mayor\u00eda de las veces se transmite de padres a hijos y puede presentarse con diferentes s\u00edntomas. Mi madre, mi t\u00eda y dos t\u00edos (4 de 6 hermanos) ten\u00edan\/tienen la enfermedad VCP. Como soy portadora de la mutaci\u00f3n, hay un 50% de probabilidades de que mi descendencia se vea afectada. El gen VCP se incluye ahora en la mayor\u00eda de los paneles de pruebas gen\u00e9ticas de enfermedades neuromusculares.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4384,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[94,95],"tags":[],"class_list":["post-3342","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-organization-interview","category-organization"],"acf":[],"yoast_head":"\nORGANIZATION: Cure VCP Disease, Inc. - LGMD Awareness Foundation<\/title>\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\/organization-interview\/2019\/12\/27\/organization-cure-vcp\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ORGANIZATION: Cure VCP Disease, Inc. - 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