{"id":21953,"date":"2012-01-31T20:21:35","date_gmt":"2012-01-31T23:21:35","guid":{"rendered":"http:\/\/www.inclusive.org.br\/?p=21953"},"modified":"2012-01-31T20:21:35","modified_gmt":"2012-01-31T23:21:35","slug":"v-encontro-brasileiro-de-sindrome-de-williams-a-forca-que-vem-do-coracao","status":"publish","type":"post","link":"https:\/\/inclusivenews.com.br\/?p=21953","title":{"rendered":"V Encontro Brasileiro de S\u00edndrome de Williams: \u201cA for\u00e7a que vem do cora\u00e7\u00e3o\u201d"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-21954 alignnone\" title=\"ABSW - Associa\u00e7\u00e3o Brasileira da S\u00edndrome de Williams - a bandeira brasileira com um cora\u00e7\u00e3o ao centro\" src=\"http:\/\/inclusivenews.com.br\/wp-content\/uploads\/absw-300x95.jpg\" alt=\"ABSW - Associa\u00e7\u00e3o Brasileira da S\u00edndrome de Williams - a bandeira brasileira com um cora\u00e7\u00e3o ao centro\" width=\"300\" height=\"95\" \/><\/p>\n<p><strong>Dias 11 e 12 de fevereiro de 2012 em S\u00e3o Paulo<\/strong><\/p>\n<p><strong>ETEC \u2013 Escola T\u00e9cnica Estadual do Estado de S\u00e3o Paulo do Parque da Juventude<\/strong><\/p>\n<p><strong><span style=\"text-decoration: underline;\"> <\/span><\/strong><\/p>\n<p>ABSW &#8211; Associa\u00e7\u00e3o Brasileira de S\u00edndrome de Williams-Beuren completa 10 anos de muita dedica\u00e7\u00e3o e amor ao pr\u00f3ximo, lutando pelos Direitos das Pessoas com Defici\u00eancia Intelectual, e divulgando informa\u00e7\u00f5es sobre a SWB para melhorar a qualidade de vida das crian\u00e7as, jovens e adultos. Tamb\u00e9m estimula a ampla difus\u00e3o de avan\u00e7os das pesquisas cient\u00edficas e tratamentos de reabilita\u00e7\u00e3o e qualidade de vida unindo as fam\u00edlias, profissionais e pessoas com a doen\u00e7a para trocarem experi\u00eancias por meio de diversos atendimentos e encontros; al\u00e9m da efetiva participa\u00e7\u00e3o na elabora\u00e7\u00e3o de pol\u00edticas p\u00fablicas democr\u00e1ticas inclusivas.<\/p>\n<p><strong><span style=\"text-decoration: underline;\">Objetivo:<\/span><\/strong> esclarecer d\u00favidas dos pais e familiares, trocar experi\u00eancias entre pesquisadores, difundir o conhecimento e comemorar os 10 anos da associa\u00e7\u00e3o.<\/p>\n<p><strong><span style=\"text-decoration: underline;\">P\u00fablico-alvo:<\/span><\/strong> profissionais da \u00e1rea m\u00e9dica, reabilita\u00e7\u00e3o, direito, educacional, habitacional, transporte, social, e cultural, pesquisadores, estudantes,\u00a0 pais, familiares, pessoas com SW, jornalistas e demais interessados.<\/p>\n<p><strong><span style=\"text-decoration: underline;\">Atividades:<\/span><\/strong><\/p>\n<ul>\n<li>6 salas com palestras e mesas redondas;<\/li>\n<li>Curso de Educa\u00e7\u00e3o Inclusiva;<\/li>\n<li>Oficinas;<\/li>\n<li>Elabora\u00e7\u00e3o de um documento com propostas aos governos sobre as pol\u00edticas p\u00fablicas necess\u00e1rias \u00e0 inclus\u00e3o de pessoas com SW;<\/li>\n<li>Recrea\u00e7\u00e3o infantil e atra\u00e7\u00f5es musicais.<\/li>\n<\/ul>\n<p><strong><span style=\"text-decoration: underline;\">Programa\u00e7\u00e3o resumida:<\/span><\/strong><\/p>\n<p><strong><span style=\"text-decoration: underline;\"> <\/span><\/strong><\/p>\n<ul>\n<li>Compreendendo a S\u00edndrome de Williams no Brasil (diagn\u00f3sticos, aconselhamento gen\u00e9tico, atendimentos do SUS e pesquisas);<\/li>\n<li>Aspectos m\u00e9dicos (cardiologia, ortopedia, problemas urin\u00e1rios, oftalmologia, otorrino, psicologia, neurologia entre outros) da SW;<\/li>\n<li>Independ\u00eancia das pessoas com SW;<\/li>\n<li>Reabilita\u00e7\u00e3o baseada na comunidade;<\/li>\n<li>Conven\u00e7\u00e3o Internacional da ONU sobre os Direitos das Pessoas com Defici\u00eancia;<\/li>\n<li>Benef\u00edcio de Presta\u00e7\u00e3o Continuada \u2013 BPC;<\/li>\n<li>Qualidade de vida;<\/li>\n<li>Educa\u00e7\u00e3o inclusiva;<\/li>\n<li>Atividades multidisciplinares;<\/li>\n<li>M\u00fasica e cultura.<\/li>\n<\/ul>\n<p><strong><span style=\"text-decoration: underline;\">Local:<\/span><\/strong><strong> ETEC \u2013 Escola T\u00e9cnica Estadual do Estado de S\u00e3o Paulo do Parque da Juventude<\/strong><\/p>\n<p>AV. Cruzeiro do Sul, 2630 \u2013 Santana \u2013 S\u00e3o Paulo \/ SP<strong> &#8211; <\/strong>Informa\u00e7\u00f5es sobre o local: <a href=\"http:\/\/www.etecparquedajuventude.com.br\/\">http:\/\/www.etecparquedajuventude.com.br<\/a><\/p>\n<p><strong><span style=\"text-decoration: underline;\"> <\/span><\/strong><\/p>\n<p><strong><span style=\"text-decoration: underline;\">Hor\u00e1rio:<\/span><\/strong> das 8hs \u00e0s 18hs<\/p>\n<p><strong>Programa\u00e7\u00e3o completa no site da ABSW &#8211; Site: <\/strong><a href=\"http:\/\/www.swbrasil.org.br\/\">www.swbrasil.org.br<\/a><\/p>\n<p><strong>Inscri\u00e7\u00f5es com certificado de participa\u00e7\u00e3o: E-mail: <\/strong><a href=\"mailto:swbrasil@swbrasil.org.br\">swbrasil@swbrasil.org.br<\/a><a href=\"mailto:swbrasil@swbrasil.org.br\"> <\/a><\/p>\n<p><a href=\"mailto:swbrasil@swbrasil.org.br\">Tel\/fax: (11) 2305-2957 (Secretaria) <\/a><\/p>\n<p><strong><span style=\"text-decoration: underline;\"> <\/span><\/strong><\/p>\n<p><strong><span style=\"text-decoration: underline;\">CONTRIBUI\u00c7\u00c3O VOLUT\u00c1RIA<\/span><\/strong><\/p>\n<p><strong><span style=\"text-decoration: underline;\">O que \u00e9 a S\u00edndrome de Wiliams Beuren?<\/span><\/strong><\/p>\n<p>A SWB \u00e9 uma defici\u00eancia gen\u00e9tica rara, n\u00e3o \u00e9 cong\u00eanita e nem tem causas ambientais ou influ\u00eancias de fatores psicossociais. Tem impacto sobre diversas \u00e1reas do desenvolvimento da pessoa, incluindo cognitiva, comportamental e motora, tanto em mulheres como homens, em qualquer lugar do mundo e grupo \u00e9tnico.<\/p>\n<p>O n\u00famero de pessoas com SW varia entre 1 em cada 10.000 a 1 em cada 25.000. Na grande maioria das fam\u00edlias a ocorr\u00eancia \u00e9 espor\u00e1dica. Embora se trate de uma s\u00edndrome at\u00e9 ent\u00e3o considerada rara por alguns estudiosos, j\u00e1 observamos in\u00fameros casos diagnosticados no Brasil. Existe tratamento cl\u00ednico para as altera\u00e7\u00f5es oculares, cardiovasculares, renais e urin\u00e1rias, al\u00e9m de reabilita\u00e7\u00e3o, fisioterapia, fonoaudiologia e estimula\u00e7\u00e3o psicomotora global. No entanto, ainda n\u00e3o h\u00e1 cura. Devido as caracter\u00edsticas da SW aparecer em v\u00e1rios \u00f3rg\u00e3os e estar associada \u00e0 presen\u00e7a de defici\u00eancia intelectual, muitos pais encontram dificuldades diversas em todos os setores da sociedade (sa\u00fade, educa\u00e7\u00e3o, trabalho, lazer), principalmente, no diagn\u00f3stico ou na orienta\u00e7\u00e3o m\u00e9dica adequada, causando tratamentos muitas vezes incorretos, impedindo um melhor desenvolvimento das pessoas.<\/p>\n<p><strong><span style=\"text-decoration: underline;\">O que \u00e9 a ABSW \u2013 Associa\u00e7\u00e3o Brasileira da S\u00edndrome de Williams?<\/span><\/strong><\/p>\n<p><strong> <\/strong><\/p>\n<p>Criada em 2002, \u00e9 a \u00fanica associa\u00e7\u00e3o civil, sem fins lucrativos, de direito privado no Brasil, dedicada \u00e0 qualidade de vida das pessoas com a s\u00edndrome. Foi fundada por J\u00f4 Nunes (atual presidente da associa\u00e7\u00e3o), por inspira\u00e7\u00e3o de sua saudosa filha, J\u00e9ssica Nunes Herculano, jovem diagnosticada com a s\u00edndrome aos 7 anos, e primeira a realizar um transplante de cora\u00e7\u00e3o no mundo. Hoje a associa\u00e7\u00e3o congrega de mais de 1.200 membros entre: familiares, crian\u00e7as, jovens e adultos nos mais de 18 n\u00facleos nos seguintes estados S\u00e3o Paulo, Rio de Janeiro, Esp\u00edrito Santo, Paran\u00e1, Rio Grande do Sul, Santa Catarina, Pernambuco, Minas Gerais, Goi\u00e1s, Bras\u00edlia, Manaus e Bahia. S\u00f3 no Estado de S\u00e3o Paulo funcionam n\u00facleos nas cidades de Campinas, Piracicaba, Osasco, ABCD Paulista, Baixada Santista e Sorocaba. A associa\u00e7\u00e3o tamb\u00e9m tem grupos de atua\u00e7\u00e3o pela Am\u00e9rica Latina (no Chile e na Espanha) e entre outros pa\u00edses como R\u00fassia, Canad\u00e1 e Portugal. Uma das principais metas da Associa\u00e7\u00e3o Brasileira de S\u00edndrome de Williams \u00e9 levantar junto \u00e0s institui\u00e7\u00f5es da \u00e1rea de sa\u00fade a identifica\u00e7\u00e3o dos casos existentes no Brasil, diagnosticados ou com suspeitas.<\/p>\n<p><strong>Informa\u00e7\u00f5es: <\/strong>Rua Engenheiro Andrade J\u00fanior, 229 &#8211; Bel\u00e9m &#8211; S\u00e3o Paulo &#8211; SP \u2013 CEP: 03061-040<\/p>\n","protected":false},"excerpt":{"rendered":"<p>O encontro acontece entre os dias 11 e 12 fevereiro, na ETEC \u2013 Escola T\u00e9cnica Estadual do Estado de S\u00e3o Paulo do Parque da Juventude.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-container-style":"default","site-container-layout":"default","site-sidebar-layout":"default","disable-article-header":"default","disable-site-header":"default","disable-site-footer":"default","disable-content-area-spacing":"default","footnotes":""},"categories":[12,4],"tags":[],"class_list":["post-21953","post","type-post","status-publish","format-standard","hentry","category-cursos-e-eventos","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>V Encontro Brasileiro de S\u00edndrome de Williams: \u201cA for\u00e7a que vem do cora\u00e7\u00e3o\u201d -<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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