{"id":1952,"date":"2018-05-30T12:41:54","date_gmt":"2018-05-30T17:41:54","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1952"},"modified":"2018-05-30T12:41:54","modified_gmt":"2018-05-30T17:41:54","slug":"cure-lgmd2i-foundation","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pt\/lgmd2i\/2018\/05\/30\/cure-lgmd2i-foundation\/","title":{"rendered":"ORGANIZA\u00c7\u00c3O: Funda\u00e7\u00e3o CureLGMD2i"},"content":{"rendered":"
\"\"<\/figure>\n\n\n

NOME DA ORGANIZA\u00c7\u00c3O<\/strong>: Funda\u00e7\u00e3o CureLGMD2i<\/p>\n

S\u00cdTIO WEB:<\/strong>\u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u00a0www.curelgmd2i.com<\/a><\/u><\/p>\n

FACEBOOK:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong> www.facebook.com\/CureLGMD2i\/<\/a><\/u><\/p>\n

\u00a0<\/p>\n

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

LGMD2i e as distroglicanopatias (FKRP)<\/p>\n

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

Registo FKRP em https:\/\/www.fkrp-registry.org<\/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, institui\u00e7\u00e3o de caridade p\u00fablica 501 (c)(3) isenta de impostos com sede nos EUA<\/p>\n

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

A CureLGMD2i foi inicialmente fundada como Samantha J. Brazzo Foundation pela fam\u00edlia Brazzo em 2011, depois de a sua jovem filha, Samantha, ter sido diagnosticada com LGMD2i. Aperceberam-se de que n\u00e3o havia outras organiza\u00e7\u00f5es a angariar fundos especificamente para a investiga\u00e7\u00e3o da 2i, pelo que criaram esta funda\u00e7\u00e3o sem fins lucrativos para angariar dinheiro e sensibilizar para a cura desta doen\u00e7a rara e progressiva.<\/p>\n

qual \u00e9 a miss\u00e3o da sua organiza\u00e7\u00e3o?<\/strong><\/p>\n

Angariar fundos para sensibilizar e apoiar a investiga\u00e7\u00e3o cient\u00edfica diretamente orientada para a cria\u00e7\u00e3o de um tratamento bem sucedido ou de uma cura para a LGMD2i.<\/p>\n

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

Apoio financeiro \u00e0 Confer\u00eancia Familiar sobre Distroglicanopatia no Iowa e a projectos de investiga\u00e7\u00e3o para compreender melhor a progress\u00e3o da LGMD2i, o desenvolvimento de medicamentos e a cria\u00e7\u00e3o de um programa bem sucedido de terapia gen\u00e9tica para a LGMD2i.<\/p>\n

At\u00e9 \u00e0 data, a Funda\u00e7\u00e3o CureLGMD2i forneceu mais de $400.000 a programas de investiga\u00e7\u00e3o que est\u00e3o a trabalhar agressivamente para estabelecer um tratamento para a LGMD2i.<\/p>\n

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

Recentemente, patrocin\u00e1mos um encontro de terapia gen\u00e9tica \"Into the Clinic\", realizado na UMass, que reuniu cientistas e empresas de topo na \u00e1rea da 2i para fornecer uma atualiza\u00e7\u00e3o sobre o trabalho pr\u00e9-cl\u00ednico e a prepara\u00e7\u00e3o para o ensaio cl\u00ednico. Esta reuni\u00e3o resultou na cria\u00e7\u00e3o de um Grupo de Dire\u00e7\u00e3o da Terapia G\u00e9nica LGMD2i, que est\u00e1 a trabalhar no sentido de ajudar a estabelecer um futuro ensaio cl\u00ednico.<\/p>\n

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

Somos a \u00fanica organiza\u00e7\u00e3o que aceita donativos dedut\u00edveis nos impostos, sendo que o 100% vai diretamente para projectos relacionados com a investiga\u00e7\u00e3o da Distrofia Muscular das Cinturas dos Membros Tipo 2I.<\/p>\n

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

Neste momento, estamos a ter um grande impulso no Facebook para angariar fundos para apoiar um futuro ensaio cl\u00ednico de terapia gen\u00e9tica em LGMD2i. \"Entre em a\u00e7\u00e3o criando a sua pr\u00f3pria angaria\u00e7\u00e3o de fundos no Facebook - diga ao seu c\u00edrculo de amigos\/fam\u00edlia como o LGMD2i o afectou, o que faria quando ficasse curado e pe\u00e7a donativos para apoiar o CureLGMD2i. Tamb\u00e9m pode partilhar o separador de donativos no nosso s\u00edtio Web em https:\/\/curelgmd2i.com\/donations<\/a><\/p>\n

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

Contacte Kelly Brazzo em kbrazzo@yahoo.com ou envie-nos uma mensagem atrav\u00e9s da nossa p\u00e1gina do Facebook em https:\/\/www.facebook.com\/CureLGMD2i\u00a0<\/a><\/p>\n

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

Se tiver um diagn\u00f3stico confirmado de LGMD2i - certifique-se de que se regista no Registo Global FKRP em https:\/\/www.fkrp-registry.org<\/a>\u00a0 \u00a0 #Sfor\u00e7a em n\u00fameros!<\/p>\n

\u00a0<\/p>\n

\u00a0<\/p>\n

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

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