{"id":2341,"date":"2018-11-18T21:09:52","date_gmt":"2018-11-19T03:09:52","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2341"},"modified":"2018-11-18T21:09:52","modified_gmt":"2018-11-19T03:09:52","slug":"lgmd-organization-gfb-onlus","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/lgmd2e\/2018\/11\/18\/lgmd-organization-gfb-onlus\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: GFB ONLUS"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOME DA ORGANIZA\u00c7\u00c3O<\/strong>: GFB ONLUS (GRUPPO FAMILIARI BETA-SARCOGLICANOPATIE ONLUS)<\/p>\n

S\u00cdTIO WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 www.lgmd2e.org<\/a><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>www.facebook.com\/gfbonlus-1045732368903903<\/a><\/p>\n

TWITTER:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong>twitter.com\/gfbonlus<\/a><\/p>\n

EM QUE SUBTIPO DE LGMD SE CONCENTRA A SUA ORGANIZA\u00c7\u00c3O:\u00a0 <\/strong><\/p>\n

Concentramo-nos na Distrofia Muscular das Cinturas dos Membros tipo 2E (LGMD2E)<\/p>\n

SE NOS CONCENTRARMOS NUM SUBTIPO, EXISTE UM REGISTO E COMO PODEM OS DOENTES ADERIR? <\/strong><\/p>\n

No nosso site recolhemos informa\u00e7\u00f5es sobre pessoas afectadas por Lgmd2E- Lgmd2D- Lgmd2C - Lgmd2F, de acordo com a Lei da Privacidade. O nosso primeiro objetivo \u00e9 a elabora\u00e7\u00e3o de dados estat\u00edsticos e, em segundo lugar, gostar\u00edamos de criar um registo de doentes com sarcoglicanopatias.<\/p>\n

Aqui pode ler as estat\u00edsticas dos nossos doentes:
http:\/\/www.beta-sarcoglicanopathy.org\/index.php?option=com_content&view=article&id=47&Itemid=53<\/p>\n

O GFB conta atualmente com um total de 403 doentes afectados por Sarcoglicanopatia (LGMD2C -2D - 2E -2F). Convidamos as pessoas que tenham informa\u00e7\u00f5es adicionais para partilhar a enviarem-nos essas informa\u00e7\u00f5es atrav\u00e9s de info@beta-sarcoglicanopatie.it<\/a> .<\/p>\n

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

Sim, somos uma organiza\u00e7\u00e3o sem fins lucrativos. A 27 de fevereiro de 2013 a GFB Onlus foi oficialmente criada em It\u00e1lia como organiza\u00e7\u00e3o de voluntariado, inscrita na sec\u00e7\u00e3o provincial do registo regional das organiza\u00e7\u00f5es de voluntariado da Lombardia n. SO-81. Em 2014 foi tamb\u00e9m inclu\u00edda no registo regional das Associa\u00e7\u00f5es de Solidariedade Familiar n. 947.<\/p>\n

O QUE INSPIROU A CRIA\u00c7\u00c3O DA SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n

Ao longo dos anos em que vivemos a doen\u00e7a dos nossos filhos, apercebemo-nos de que n\u00e3o existiam estudos cient\u00edficos precisos e abordagens terap\u00eauticas direcionadas para esta doen\u00e7a (at\u00e9 2012). Fomos completamente deixados sozinhos e, para al\u00e9m disso, n\u00e3o existiam associa\u00e7\u00f5es para a Lgmd2E.<\/p>\n

QUAL \u00c9 A MISS\u00c3O DA SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

O Gfb Onlus foi criado para financiar projectos de investiga\u00e7\u00e3o destinados a tratar a doen\u00e7a. Pretende tamb\u00e9m ser uma forma de nos manter melhor informados sobre informa\u00e7\u00f5es\/not\u00edcias dif\u00edceis de encontrar, bem como sobre as actividades de investiga\u00e7\u00e3o espec\u00edficas mais actualizadas para esta doen\u00e7a em particular. A nossa miss\u00e3o \u00e9 representar as pessoas com Lgmd2E, junto das institui\u00e7\u00f5es, organiza\u00e7\u00f5es de investiga\u00e7\u00e3o, outras associa\u00e7\u00f5es, junto dos doentes. Esta fun\u00e7\u00e3o \u00e9 mantida apenas por n\u00f3s at\u00e9 agora porque n\u00e3o existem outros grupos com o mesmo objetivo - nem em It\u00e1lia nem no estrangeiro. Este site e o seu grupo de autoajuda foram criados a partir do desejo de entrar em contacto com outras fam\u00edlias afectadas por esta doen\u00e7a, de modo a partilhar os v\u00e1rios aspectos da vida quotidiana com esta doen\u00e7a, bem como os aspectos cl\u00ednicos, jur\u00eddicos, log\u00edsticos e organizacionais relacionados com a investiga\u00e7\u00e3o cient\u00edfica e a utiliza\u00e7\u00e3o de v\u00e1rios meios auxiliares. A nossa inten\u00e7\u00e3o \u00e9 realizar uma primeira recolha de dados sobre estes doentes, tendo em vista um futuro registo de doentes e ensaios cl\u00ednicos espec\u00edficos.<\/p>\n

QUE SERVI\u00c7OS PRESTA A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

2012: Desde o m\u00eas de agosto de 2012, as fam\u00edlias da GFB decidiram iniciar os primeiros financiamentos para o projeto de terapia gen\u00e9tica LGMD2E em Columbus Ohio pelo Prof. J. Mendell. At\u00e9 \u00e0 data, foram efectuados cinco pagamentos num total de $ 1.300.000. 2017: Nasce a Myonexus Therapeutics Company e a GFB ONLUS entra na empresa. O objetivo da Myonexus Therapeutics Company \u00e9 desenvolver a terapia gen\u00e9tica para a distrofia muscular da cintura escapular (LGMD) dos tipos 2B, 2C, 2D, 2E e 2L. http:\/\/myonexustx.com\/ 2018: A GFB Onlus participou na assinatura do acordo entre a Sarepta e a Myonexus, duas empresas de biotecnologia com sede nos Estados Unidos. Outras das nossas actividades s\u00e3o a organiza\u00e7\u00e3o de viagens \u00e0s montanhas com cadeiras de trekking e outras actividades desportivas (sky) e recreativas para pessoas com defici\u00eancia, a organiza\u00e7\u00e3o de reuni\u00f5es anuais das fam\u00edlias da GFB ONLUS e servi\u00e7os de transporte para pessoas com defici\u00eancia, tamb\u00e9m atrav\u00e9s de acordos com organismos p\u00fablicos, a organiza\u00e7\u00e3o de um congresso cient\u00edfico internacional para LGMD2E e outras sarcoglicanopatias e apoio psicol\u00f3gico para pessoas com defici\u00eancia.<\/p>\n

DE QUE \u00c9 QUE A SUA ORGANIZA\u00c7\u00c3O MAIS SE ORGULHA:<\/strong><\/p>\n

Financiar a fase pr\u00e9-cl\u00ednica do projeto de terapia g\u00e9nica Lgmd2e coordenado pelo Prof. J. Mendell em Columbus Ohio USA ($ 1.300.000), participar na Myonexus Therapeutics e no acordo entre a Sarepta e a Myonexus.<\/p>\n

O que quer que o mundo saiba sobre a SUA ORGANIZA\u00c7\u00c3O<\/strong>:<\/p>\n

Estamos a desenvolver grandes liga\u00e7\u00f5es nesta \u00e1rea e esperamos criar um registo que nos ajude quando os ensaios cl\u00ednicos estiverem prontos.<\/p>\n

COMO \u00c9 QUE AS PESSOAS SE PODEM ENVOLVER NO APOIO \u00c0 SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

O nosso s\u00edtio Web ter\u00e1 informa\u00e7\u00f5es para nos contactar e, eventualmente, para fazer donativos dedut\u00edveis nos impostos.<\/p>\n

QUAL \u00c9 A MELHOR FORMA DE CONTACTAR A SUA ORGANIZA\u00c7\u00c3O:<\/strong><\/p>\n

Contacte-nos por correio eletr\u00f3nico para info@beta-sarcoglicanopatie.it<\/a> . Entre em contacto connosco em qualquer altura. Tamb\u00e9m pode sempre enviar-nos uma mensagem atrav\u00e9s do Facebook ou do Twitter.<\/p>\n

H\u00c1 MAIS ALGUMA COISA QUE GOSTARIA DE ACRESCENTAR?<\/strong><\/p>\n

Aguardamos com expetativa o sucesso na obten\u00e7\u00e3o de curas e tratamentos para a LGMD2E e outros subtipos de lgmd.<\/p>\n

\u00a0<\/p>","protected":false},"excerpt":{"rendered":"

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