![\"\"](\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Sam-new.jpg\")
No ver\u00e3o de 1998, o Dr. Leslie Gordon e o Dr. Scott Berns descobriram que seu filho Sam, que tinha ent\u00e3o 22 meses de idade, havia sido diagnosticado com S\u00edndrome de Hutchinson-Gilford Progeria (\u201cProgeria\u201d), comumente chamada de s\u00edndrome de \u201cenvelhecimento r\u00e1pido\u201d. Rapidamente ficou claro para os pais de Sam que havia uma enorme falta de informa\u00e7\u00f5es m\u00e9dicas e recursos dedicados \u00e0 Progeria. Eles reconheceram que n\u00e3o havia lugar para essas crian\u00e7as buscarem ajuda m\u00e9dica, nenhum lugar para os pais ou m\u00e9dicos buscarem informa\u00e7\u00f5es e nenhuma fonte de financiamento para pesquisadores que quisessem fazer pesquisas sobre Progeria. A falta de informa\u00e7\u00f5es dispon\u00edveis para as fam\u00edlias, combinada com a falta de oportunidades de pesquisa e financiamento de pesquisas, inspirou a fam\u00edlia de Sam, junto com seus amigos e colegas, a lan\u00e7ar a The Progeria Research Foundation, Inc. (\u201cPRF\u201d), a \u00fanica organiza\u00e7\u00e3o sem fins lucrativos do mundo dedicada \u00e0 pesquisa sobre Progeria.<\/p>\n
Sam faleceu em 10 de janeiro de 2014, deixando um legado de inspira\u00e7\u00e3o que agora motiva a PRF e seus apoiadores a continuar a busca por uma cura, com tremenda determina\u00e7\u00e3o, paix\u00e3o e, acima de tudo, amor.<\/p>\n<\/div>\n<\/div>\n
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No ver\u00e3o de 1998, o Dr. Leslie Gordon e o Dr. Scott Berns descobriram que seu filho Sam, que tinha ent\u00e3o 22 meses de idade, havia sido diagnosticado com S\u00edndrome de Hutchinson-Gilford Progeria (\u201cProgeria\u201d), comumente chamada de s\u00edndrome de \u201cenvelhecimento prematuro\u201d. Rapidamente ficou claro para os pais de Sam que havia uma enorme falta de informa\u00e7\u00f5es m\u00e9dicas e recursos dedicados \u00e0 Progeria. Eles reconheceram que n\u00e3o havia lugar para essas crian\u00e7as buscarem ajuda m\u00e9dica, nenhum lugar para os pais ou m\u00e9dicos buscarem informa\u00e7\u00f5es e nenhuma fonte de financiamento para pesquisadores que quisessem fazer pesquisas sobre Progeria. A falta de informa\u00e7\u00f5es dispon\u00edveis para as fam\u00edlias, combinada com a falta de oportunidades de pesquisa e financiamento de pesquisa, inspirou a fam\u00edlia de Sam, junto com seus amigos e colegas, a lan\u00e7ar a The Progeria Research Foundation, Inc. (\u201cPRF\u201d), a \u00fanica organiza\u00e7\u00e3o sem fins lucrativos do mundo dedicada \u00e0 pesquisa sobre Progeria.<\/p>\n
Sam faleceu em 10 de janeiro de 2014, deixando um legado de inspira\u00e7\u00e3o que agora motiva a PRF e seus apoiadores a continuar a busca por uma cura, com mais determina\u00e7\u00e3o do que nunca.<\/p>\n<\/div>\n<\/div>\n
[\/et_pb_text][et_pb_button button_url=\u201dhttps:\/\/www.progeriaresearch.org\/meet-the-kids\u201d button_text=\u201dSaiba mais sobre a hist\u00f3ria de Sam\u201d button_alignment=\u201dcenter\u201d _builder_version=\u201d4.16\u2033 background_layout=\u201ddark\u201d custom_margin=\u201d35px||\u201d global_colors_info=\u201d{}\u201d]<\/p>\n
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Junto com membros do conselho atenciosos e dedicados e outros volunt\u00e1rios generosos, a Progeria Research Foundation foi criada para conscientizar, educar e ajudar as fam\u00edlias, seus m\u00e9dicos, pesquisadores e o p\u00fablico em geral sobre a S\u00edndrome de Progeria de Hutchinson-Gilford. Al\u00e9m disso, a PRF financia pesquisas m\u00e9dicas e executa programas relacionados a pesquisas especificamente voltados para encontrar a causa*, tratamentos e cura para essa s\u00edndrome.<\/p>\n
Desde o seu in\u00edcio, a PRF se beneficiou da lideran\u00e7a da advogada Audrey Gordon, tia de Sam, que atua como presidente e diretora executiva da organiza\u00e7\u00e3o; Leslie Gordon, diretora m\u00e9dica, e Dr. Scott Berns, presidente do conselho de administra\u00e7\u00e3o.<\/p>\n
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Voc\u00ea sabia?<\/b><\/h1>\n
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Com exce\u00e7\u00e3o de nossa equipe, todos os envolvidos com a PRF s\u00e3o volunt\u00e1rios! Nosso Conselho de Administra\u00e7\u00e3o, Escritur\u00e1rio, Tesoureiro, membros do comit\u00ea, tradutores, angariadores de fundos, etc., todos dedicam seu tempo, energia e talentos para promover nossa miss\u00e3o sem remunera\u00e7\u00e3o. Como resultado, nossos custos administrativos s\u00e3o muito baixos. Isso deixa mais dinheiro para dedicar \u00e0 pesquisa m\u00e9dica e \u00e0 conscientiza\u00e7\u00e3o p\u00fablica, o que, em \u00faltima an\u00e1lise, leva \u00e0 descoberta de uma cura para a Prog\u00e9ria.<\/p>\n
Leslie B. Gordon, MD, PhD, \u00e9 a Diretora M\u00e9dica da PRF. Ela tamb\u00e9m \u00e9 a Investigadora Principal dos programas relacionados \u00e0 pesquisa da PRF: The PRF International Registry, Cell & Tissue Bank, Medical & Research Database e Diagnostics Testing Program, e coautora da descoberta hist\u00f3rica do gene Progeria e da descoberta do tratamento*.<\/p>\n
* Gra\u00e7as aos esfor\u00e7os da PRF, em abril de 2003 a PRF e os Institutos Nacionais de Sa\u00fade anunciaram que\u00a0<\/span>a causa da Prog\u00e9ria, uma muta\u00e7\u00e3o no gene LMNA, foi descoberta<\/a>, e em setembro de 2012,\u00a0<\/span>o primeiro tratamento foi descoberto.<\/a><\/p>\n H\u00e1 muito trabalho a ser feito e poucos recursos para faz\u00ea-lo. N\u00e3o podemos fazer isso sozinhos. Com seu apoio, a cura ser\u00e1 descoberta para essas crian\u00e7as maravilhosas.<\/p>\n [\/et_pb_text][\/et_pb_column_inner][et_pb_column_inner type=\u201d1_2\u2033 saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/1.-Progeria-FAQs-square.jpg\u201d align=\u201dcenter\u201d align_tablet=\u201dcenter\u201d align_phone=\u201d\u201d align_last_edited=\u201don|desktop\u201d _builder_version=\u201d4.16\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n [\/et_pb_image][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=”1″ module_class=”footer” _builder_version=”4.21.0″ background_color=”#29327a” custom_margin=”-2px|||||” custom_padding=”0|0px|0|0px|false|false” z_index_tablet=”500″ border_width_top=”12px” border_color_top=”#00b2e2″ global_module=”133″ locked=”off” global_colors_info=”{}”][et_pb_row column_structure=”1_4,1_4,1_2″ make_equal=”on” module_class=” et_pb_row_fullwidth” _builder_version=”4.16″ width=”89%” width_tablet=”80%” width_phone=”” width_last_edited=”on|desktop” max_width=”89%” max_width_tablet=”80%” max_width_phone=”” max_width_last_edited=”on|desktop” z_index_tablet=”500″ make_fullwidth=”on” width_unit=”off” custom_width_percent=”100%” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_cta button_url=”https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz” button_text=”Sign Up Now” admin_label=”Sign Up for Updates” module_class=”sign-btn” _builder_version=”4.27.4″ header_font_size=”25px” background_color=”#29327a” animation_style=”slide” animation_direction=”left” animation_intensity_slide=”25%” link_option_url=”https:\/\/lp.constantcontactpages.com\/sl\/88gWWwz” header_font_size_tablet=”” header_font_size_phone=”30px” header_font_size_last_edited=”on|desktop” z_index_tablet=”500″ border_radii=”on|25px|25px|25px|25px” global_colors_info=”{}” button_bg_color__hover_enabled=”on” button_bg_color__hover=”#8fd2ed” button_border_color__hover_enabled=”on”]<\/p>\n [\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR\u201d button_text=\u201dDoe agora\u201d admin_label=\u201dJuntos, encontraremos a cura!\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.16\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201don|desktop\u201d body_font_size_tablet=\u201d\u201d body_font_size_phone=\u201d\u201d body_font_size_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201don|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201don\u201d bot\u00e3o_bg_color__hover=\u201d#8fd2ed\u201d bot\u00e3o_border_color__hover_enabled=\u201don\u201d]<\/p>\n [\/et_pb_cta][\/et_pb_column][et_pb_column tipo=\u201d1_2\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/05\/2025-strip-for-website-footer-no-years.png\u201d title_text=\u201dFaixa de rodap\u00e9 de site de 2025 sem anos\u201d _builder_version=\u201d4.27.4\u2033 _module_preset=\u201ddefault\u201d custom_margin=\u201d35px||||false|false\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":" Nossa hist\u00f3ria come\u00e7ou quando o Dr. Leslie Gordon e o Dr. Scott Berns descobriram que seu filho Sam foi diagnosticado com Progeria. Assim, amigos e familiares se uniram e formaram a \u00fanica organiza\u00e7\u00e3o sem fins lucrativos dedicada \u00e0 pesquisa da Progeria.<\/p>","protected":false},"author":1,"featured_media":12071,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-355","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"\n<\/em><\/h3>\n
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Juntos, n\u00f3s VAI<\/em> Encontre a cura!<\/h3>\n
Inscrever-se<\/h2>\n
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