{"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\/pt\/lgmd2a\/2018\/04\/15\/coalition-to-cure-calpain-3\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: Coliga\u00e7\u00e3o para a Cura da Calpa\u00edna 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>NOME DA ORGANIZA\u00c7\u00c3O<\/strong>:         Coliga\u00e7\u00e3o para a cura da Calpa\u00edna 3<\/p>\n<p><strong>S\u00cdTIO 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\/\">Coliga\u00e7\u00e3o para Curar a Calpa\u00edna 3: Superar a LGMD2A\/Calpainopatia<\/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>EM QUE SUBTIPO DE LGMD SE CONCENTRA A SUA ORGANIZA\u00c7\u00c3O:\u00a0 <\/strong><\/p>\n<p>LGMD2A, uma forma de Calpainopatia<\/p>\n<p><strong>SE NOS CONCENTRARMOS NUM SUBTIPO, EXISTE UM REGISTO E COMO PODEM OS DOENTES ADERIR? <\/strong><\/p>\n<p>Sim, mantemos o Registo global de doentes LGMD2A.  \u00c9 f\u00e1cil inscrever-se em <a href=\"http:\/\/www.lgmd2a.org\">www.lgmd2a.org<\/a><\/p>\n<p><strong>A sua organiza\u00e7\u00e3o \u00e9 uma organiza\u00e7\u00e3o sem fins lucrativos? Em caso afirmativo, de que tipo:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><\/p>\n<p>Sim, somos uma institui\u00e7\u00e3o de caridade p\u00fablica 501 (c)(3) isenta de impostos, sediada nos EUA<\/p>\n<p><strong>O QUE INSPIROU A CRIA\u00c7\u00c3O DA SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n<p>A Coalition to Cure Calpain 3 (C3) foi fundada em 2010 com o objetivo espec\u00edfico de financiar esfor\u00e7os de investiga\u00e7\u00e3o centrados na compreens\u00e3o da biologia e na descoberta de uma cura para a LGMD2A, uma forma de calpainopatia. Esta organiza\u00e7\u00e3o foi criada por doentes e respectivas fam\u00edlias que se sentiam frustrados com a falta de conhecimento sobre a doen\u00e7a e com o facto de estar a ser feita muito pouca investiga\u00e7\u00e3o. Para alguns de n\u00f3s, at\u00e9 a obten\u00e7\u00e3o de um diagn\u00f3stico espec\u00edfico demorou d\u00e9cadas.  Somos motivados pelo nosso desejo de encorajar a colabora\u00e7\u00e3o entre os cientistas, as pessoas que t\u00eam LGMD2A, as suas fam\u00edlias e amigos, e a comunidade em geral para p\u00f4r fim a esta doen\u00e7a \"\u00f3rf\u00e3\" pouco investigada e pouco financiada.<\/p>\n<p><strong>QUAL \u00c9 A MISS\u00c3O DA SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n<p>A C3 est\u00e1 empenhada em tratar e, em \u00faltima an\u00e1lise, curar a distrofia muscular da cintura escapular tipo 2A (LGMD2A), uma forma de calpainopatia. A nossa miss\u00e3o \u00e9 financiar investiga\u00e7\u00e3o de elevado potencial e ensaios cl\u00ednicos, ao mesmo tempo que educamos a comunidade global sobre esta doen\u00e7a.<\/p>\n<p><strong>QUE SERVI\u00c7OS PRESTA A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n<p>- Financiar a investiga\u00e7\u00e3o centrada na LGMD2A\/Calpainopatia<\/p>\n<p>- Manter o registo global de doentes para a LGMD2A\/Calpainopatia<\/p>\n<p>- Educar a comunidade global (incluindo a comunidade cient\u00edfica e os doentes, as suas fam\u00edlias e o p\u00fablico em geral) sobre a doen\u00e7a atrav\u00e9s do nosso s\u00edtio Web, das redes sociais, da presen\u00e7a em confer\u00eancias cient\u00edficas e de comunica\u00e7\u00f5es por correio eletr\u00f3nico<\/p>\n<p>- Disponibilizar um f\u00f3rum de apoio aos doentes e \u00e0s suas fam\u00edlias no Facebook (<a href=\"\/pt\/carol@curecalpain3.org\/\">correio eletr\u00f3nico C3 Diretor de Assist\u00eancia a Doentes Carol Abraham<\/a> para aderir)<\/p>\n<p><strong>DE QUE \u00c9 QUE A SUA ORGANIZA\u00c7\u00c3O MAIS SE ORGULHA:<\/strong><\/p>\n<p>Estamos muito orgulhosos do facto de termos sido capazes de atrair e apoiar cientistas de alto calibre para estimular a investiga\u00e7\u00e3o sobre calpainopatias. A Dra. Melissa Spencer liderou o nosso Conselho Consultivo Cient\u00edfico desde a nossa cria\u00e7\u00e3o em 2010, trabalhando ao lado dos Drs. Kevin Campbell, Eric Hoffman e Lou Kunkel. A Dra. Jennifer Levy juntou-se a n\u00f3s como a primeira Diretora Cient\u00edfica do C3 em 2016 e mais do que duplicou o n\u00famero de projectos de investiga\u00e7\u00e3o que estamos a financiar. O facto de a nossa funda\u00e7\u00e3o, inicialmente apenas uma ideia que tivemos para tentar fazer a diferen\u00e7a, ter afetado quase $1,5 milh\u00f5es de d\u00f3lares \u00e0 investiga\u00e7\u00e3o sobre calpainopatias levada a cabo por cientistas de renome - Drs. Michele Calos, Lou Kunkel, Cathleen Lutz, Rita Perlingeiro, Isabelle Richard, Melissa Spencer, Volker Straub - \u00e9 algo de que nos orgulhamos.<\/p>\n<p><strong>O que quer que o mundo saiba sobre a SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n<p>Lan\u00e7\u00e1mos recentemente uma Iniciativa de Terapia G\u00e9nica que procura acelerar a compreens\u00e3o da terapia g\u00e9nica como tratamento para a LGMD2A, financiando a investiga\u00e7\u00e3o de m\u00faltiplas abordagens de terapia g\u00e9nica. Se os resultados de quaisquer projectos de investiga\u00e7\u00e3o da Iniciativa de Terapia G\u00e9nica, actuais ou futuros, forem positivos, podem avan\u00e7ar para o in\u00edcio de ensaios cl\u00ednicos em doentes com LGMD2A. Esteja atento aos nossos an\u00fancios \u00e0 medida que continuamos a financiar novos projectos. <a href=\"http:\/\/www.curecalpain3.org\/research\">http:\/\/www.curecalpain3.org\/research<\/a><\/p>\n<p><strong>COMO \u00c9 QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO \u00c0 SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n<p>Levar uma terapia do laborat\u00f3rio de investiga\u00e7\u00e3o para um ensaio cl\u00ednico \u00e9 um processo longo e dispendioso. A forma mais importante de apoiar a miss\u00e3o da nossa organiza\u00e7\u00e3o \u00e9 fazer um donativo. Cada d\u00f3lar faz a diferen\u00e7a nos nossos esfor\u00e7os para curar esta doen\u00e7a que provoca perda de massa muscular.<\/p>\n<p>Os doadores podem fazer donativos de tr\u00eas formas:<\/p>\n<p>&#8211; <a href=\"https:\/\/donatenow.networkforgood.org\/C3\">o nosso s\u00edtio Web<\/a> (em linha)<\/p>\n<p>- nosso <a href=\"https:\/\/www.crowdrise.com\/o\/en\/campaign\/c3-gene-therapy-initiative\/coalitiontocurecalpa\">Campanha Crowdrise<\/a> (em linha)<\/p>\n<p>- por correio atrav\u00e9s de cheque (offline)<\/p>\n<p><a href=\"\/pt\/info@curecalpain3.org\/\">enviar-nos um e-mail<\/a> e pedir um formul\u00e1rio de donativo ou descarregar um em <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>QUAL \u00c9 A MELHOR FORMA DE CONTACTAR A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n<p><a href=\"\/pt\/info@curecalpain3.org\/\">Enviar-nos um e-mail<\/a> em <a href=\"mailto:info@curecalpain3.org\">info@curecalpain3.org<\/a>. N\u00f3s responderemos!<\/p>\n<p><strong>H\u00c1 MAIS ALGUMA COISA QUE GOSTARIA DE ACRESCENTAR?<\/strong><\/p>\n<p>Se sabe que tem alguma forma de distrofia muscular da cintura escapular, por favor insista na realiza\u00e7\u00e3o de testes gen\u00e9ticos para identificar o seu tipo. Ainda h\u00e1 muito para todas as organiza\u00e7\u00f5es de LGMD e a comunidade cient\u00edfica aprenderem sobre este grupo de doen\u00e7as, e voc\u00ea pode ajudar juntando-se ao registo de doentes apropriado. Procure os muitos grupos de apoio; n\u00e3o est\u00e1 sozinho. Saiba que estamos motivados e a trabalhar todos os dias para aprender mais sobre a calpainopatia e para encontrar um tratamento ou uma 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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