{"id":7269,"date":"2026-01-15T21:44:36","date_gmt":"2026-01-16T00:44:36","guid":{"rendered":"https:\/\/mbinitiative.org\/?p=7269"},"modified":"2026-01-15T21:44:37","modified_gmt":"2026-01-16T00:44:37","slug":"the-medulloblastoma-initiative-fast-tracks-research-to-help-kids-with-cancer","status":"publish","type":"post","link":"https:\/\/mbinitiative.org\/pt\/the-medulloblastoma-initiative-fast-tracks-research-to-help-kids-with-cancer\/","title":{"rendered":"A Medulloblastoma Initiative acelera pesquisas para ajudar crian\u00e7as com c\u00e2ncer"},"content":{"rendered":"

A busca do empres\u00e1rio brasileiro Fernando Goldsztein pela cura do c\u00e2ncer cerebral de seu filho deu origem a um movimento global para reduzir a odisseia diagn\u00f3stica de doen\u00e7as raras.<\/p>\n\n\n\n

No campo das doen\u00e7as raras, o termo \u201codisseia diagn\u00f3stica\u201d refere-se ao longo e dif\u00edcil processo necess\u00e1rio para confirmar a doen\u00e7a de um paciente. As fam\u00edlias ent\u00e3o precisam enfrentar um caminho ainda mais angustiante para encontrar um tratamento eficaz.<\/p>\n\n\n\n

Para o empres\u00e1rio brasileiro\u00a0Fernando Goldzstein<\/a>, essa odisseia come\u00e7ou em 7 de novembro de 2015.<\/p>\n\n\n\n

\u201cN\u00f3s recebemos a not\u00edcia de que nosso filho havia sido diagnosticado com um tumor cerebral e, naquele momento, nossas vidas congelaram. \u00c9 muito dif\u00edcil colocar em palavras o que um pai ou uma m\u00e3e sente em uma situa\u00e7\u00e3o como essa.\u201d<\/p>\n\n\n\n

Frederico Goldsztein, na \u00e9poca com 9 anos, foi diagnosticado com medulloblastoma<\/a>, o tumor cerebral maligno mais comum em crian\u00e7as, e seu pai estava determinado a salvar sua vida. Sua jornada em busca de um tratamento eficaz levou a uma colabora\u00e7\u00e3o com o Hospital Children\u2019s National em Washington, D.C., e outras institui\u00e7\u00f5es de pesquisa, com o objetivo de acelerar o processo de pesquisa e diagn\u00f3stico. Esse esfor\u00e7o tamb\u00e9m resultou na cria\u00e7\u00e3o da Medulloblastoma Initiative<\/a>, uma organiza\u00e7\u00e3o internacional que busca curas para esses c\u00e2nceres raros por meio de apoio \u00e0 pesquisa cient\u00edfica.<\/p>\n\n\n\n

Em 18 de novembro, Goldsztein conversou com os fellows do programa Rare Disease Reporting da NPF<\/a> sobre a necessidade de maior colabora\u00e7\u00e3o na corrida para salvar a vida de crian\u00e7as como Frederico. A seguir est\u00e3o alguns destaques dessa sess\u00e3o.<\/p>\n\n\n\n

Para pais de crian\u00e7as com doen\u00e7as raras, desistir n\u00e3o \u00e9 uma op\u00e7\u00e3o<\/h3>\n\n\n\n

Goldsztein contou que, embora o tratamento de seu filho tenha come\u00e7ado em sua cidade natal, S\u00e3o Paulo, logo ficou claro que seria necess\u00e1rio viajar em busca de respostas. Isso porque, em determinado momento, o tumor voltou, e os m\u00e9dicos em Boston falaram que n\u00e3o havia mais nada a fazer al\u00e9m de esperar Frederico morrer.<\/p>\n\n\n\n

Goldsztein rejeitou esse conselho. Ele iniciou o \u00e1rduo processo de se educar sobre a condi\u00e7\u00e3o de seu filho e de entrar em contato com as melhores institui\u00e7\u00f5es de pesquisa dos EUA. Ele foi colocado em contato com o Dr. Roger Packer, diretor do Brain Tumor Institute do Hospital Children\u2019s National. O Dr. Packer recomendou que Frederico participasse de ensaios cl\u00ednicos em Nova Iorque e Washington.<\/p>\n\n\n\n

Mas, para pais de crian\u00e7as com c\u00e2ncer cerebral, a esperan\u00e7a pode trazer ainda mais ansiedade.<\/p>\n\n\n\n

\u201cN\u00e3o h\u00e1 comprova\u00e7\u00e3o cient\u00edfica de que as coisas v\u00e3o funcionar ou n\u00e3o, ent\u00e3o voc\u00ea est\u00e1 navegando em mares desconhecidos. Pode ser t\u00f3xico, voc\u00ea n\u00e3o sabe, mas n\u00e3o h\u00e1 op\u00e7\u00f5es. Ent\u00e3o voc\u00ea precisa fazer alguma coisa ou o tumor vai avan\u00e7ar at\u00e9 o paciente morrer.\u201d<\/p>\n\n\n\n

Frederico participou dos ensaios, mesmo eles n\u00e3o tendo sido desenvolvidos especificamente para o tipo de c\u00e2ncer que ele tinha.<\/p>\n\n\n\n

\u201cN\u00e3o havia nenhum ensaio cl\u00ednico espec\u00edfico para a doen\u00e7a de Frederico. Eu estava torcendo pelo melhor, mas precisava estar preparado para o pior.\u201d<\/p>\n\n\n\n

Crian\u00e7as com c\u00e2ncer cerebral precisam de tratamentos melhores<\/h3>\n\n\n\n

Goldsztein afirmou que, apesar da atual era de inova\u00e7\u00e3o em biotecnologia, os tratamentos para crian\u00e7as com c\u00e2ncer cerebral n\u00e3o acompanharam esse avan\u00e7o.<\/p>\n\n\n\n

\u201cAcredite se quiser, o tratamento \u00e9 muito antigo. \u00c9 dos anos 80. O tratamento \u00e9 altamente t\u00f3xico e ineficaz, porque cerca de 30% das crian\u00e7as t\u00eam reca\u00edda. E, se h\u00e1 reca\u00edda, n\u00e3o existe cura. E voc\u00ea pode at\u00e9 pensar: \u2018Bom, 70% das crian\u00e7as s\u00e3o curadas\u2019. Sim, \u00e9 verdade. No entanto, os tratamentos s\u00e3o muito, muito t\u00f3xicos, e as crian\u00e7as sofrem efeitos colaterais que afetam sua qualidade de vida, como atraso no crescimento, problemas cognitivos ou at\u00e9 mesmo tumores secund\u00e1rios.\u201d<\/p>\n\n\n\n

A Medulloblastoma Initiative impulsiona ensaios cl\u00ednicos<\/h3>\n\n\n\n

A Medulloblastoma Initiative, fundada em 2021, conseguiu aprovar dois ensaios cl\u00ednicos em 2 anos e meio \u2013 uma velocidade not\u00e1vel em uma \u00e1rea em que esse processo pode levar uma d\u00e9cada. Goldsztein disse que a filantropia e a colabora\u00e7\u00e3o entre 12 institui\u00e7\u00f5es de pesquisa nos EUA, uma no Canad\u00e1 e uma na Alemanha tornaram isso poss\u00edvel.<\/p>\n\n\n\n

\u201cQuando come\u00e7amos, n\u00e3o sab\u00edamos exatamente onde estar\u00edamos em 2, 4 anos. Eu jamais imaginaria que a MBI se tornaria um movimento global.\u201d<\/p>\n\n\n\n

A iniciativa tamb\u00e9m conta com mais dois ensaios cl\u00ednicos em desenvolvimento, e algumas crian\u00e7as cujos tumores recidivaram j\u00e1 est\u00e3o sendo tratadas.<\/p>\n\n\n\n

Nem todos t\u00eam a mesma sorte, mas Frederico desafiou as probabilidades desfavor\u00e1veis \u200b\u200bque lhe foram dadas.<\/p>\n\n\n\n

\u201cEle \u00e9 um garoto muito inteligente. Gosta muito de viajar. Gosta de ler e tamb\u00e9m adora a escola. Fred tem sido um guerreiro, e eu decidi que lutar contra o tumor cerebral pedi\u00e1trico ser\u00e1 o objetivo da minha vida daqui para frente.\u201d<\/p>","protected":false},"excerpt":{"rendered":"

Brazilian businessman Fernando Goldzstein’s quest for his son’s brain cancer cure Sparked a Global Movement to reduce the diagnostic odyssey toward rare disease diagnoses. In the rare disease realm, the term \u201cdiagnostic odyssey\u201d refers to the long, difficult process required to confirm a patient\u2019s illness. Families must then endure the even more excruciating path to […]<\/p>","protected":false},"author":4,"featured_media":7270,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-7269","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sem-categoria"],"yoast_head":"\nThe Medulloblastoma Initiative Fast Tracks Research To Help Kids with Cancer - The Medulloblastoma Initiative<\/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:\/\/mbinitiative.org\/pt\/the-medulloblastoma-initiative-fast-tracks-research-to-help-kids-with-cancer\/\" \/>\n<meta property=\"og:locale\" content=\"pt_BR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"The Medulloblastoma Initiative Fast Tracks Research To Help Kids with Cancer - The Medulloblastoma Initiative\" \/>\n<meta property=\"og:description\" content=\"Brazilian businessman Fernando Goldzstein’s quest for his son’s brain cancer cure Sparked a Global Movement to reduce the diagnostic odyssey toward rare disease diagnoses. 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