{"id":964,"date":"2017-02-27T19:06:27","date_gmt":"2017-02-27T19:06:27","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?page_id=964"},"modified":"2025-03-25T11:45:40","modified_gmt":"2025-03-25T15:45:40","slug":"spokespeople","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/pt\/spokespeople\/","title":{"rendered":"Porta-vozes"},"content":{"rendered":"

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Porta-vozes<\/h1>\n

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\n[\/et_pb_sidebar][\/et_pb_column][et_pb_column type=\u201d3_4\u2033 specialty_columns=\u201d3\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_row_inner _builder_version=\u201d4.16\u2033 background_color=\u201d#00b2e2\u2033 custom_margin=\u201d41px||\u201d custom_margin_tablet=\u201d0px||\u201d custom_margin_phone=\u201d\u201d custom_margin_last_edited=\u201don|phone\u201d custom_padding=\u201d39.4375px|20px|35px|20px|false|true\u201d animation_style=\u201dslide\u201d animation_direction=\u201dtop\u201d animation_intensity_slide=\u201d25%\u201d box_shadow_style=\u201dpreset1\u2033 box_shadow_blur=\u201d38px\u201d box_shadow_spread=\u201d-12px\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner 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_text admin_label=\u201dPorta-vozes da Progeria Research Foundation\u201d _builder_version=\u201d4.16\u2033 header_2_line_height=\u201d1.2em\u201d background_layout=\u201ddark\u201d custom_margin=\u201d||\u201d custom_padding=\u201d|||\u201d custom_padding_tablet=\u201d|50px||50px||true\u201d custom_padding_phone=\u201d\u201d custom_padding_last_edited=\u201dno|desktop\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d\u201d header_font_size_last_edited=\u201dno|desktop\u201d header_2_font_size_tablet=\u201d25px\u201d header_2_font_size_phone=\u201d\u201d header_2_font_size_last_edited=\u201dno|tablet\u201d header_4_font_size_tablet=\u201d\u201d header_4_font_size_phone=\u201d19px\u201d header_4_font_size_last_edited=\u201dno|telefone\u201d header_4_line_height_tablet=\u201d\u201d header_4_line_height_phone=\u201d1.2em\u201d header_4_line_height_last_edited=\u201dno|telefone\u201d z_index_tablet=\u201d500\u2033 informa\u00e7\u00f5es_de_cores_globais=\u201d{}\u201d]<\/p>\n

Porta-vozes da Progeria Research Foundation<\/h2>\n

[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner padding_custom_last_edited=\u201don|phone\u201d padding_left_right_link_1=\u201dfalse\u201d padding_left_right_link_2=\u201dtrue\u201d _builder_version=\u201d4.16\u2033 padding_custom_tablet=\u201d||0px|35px||false\u201d padding_custom_phone=\u201d||0px|20px||false\u201d animation_direction=\u201dright\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner tipo_de_coluna_de_especialidade_salva=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 padding_custom_padding=\u201d|50px||\u201d custom_padding_tablet=\u201d\u201d custom_padding_phone=\u201d||30px\u201d custom_padding_last_edited=\u201don|desktop\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_team_member name=\u201dAudrey Gordon, Esq.\u201d position=\u201dPresidente e Diretora Executiva\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Audrey-gala-09-square.jpg\u201d admin_label=\u201dAudrey Gordon\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.21.0\u2033 position_font=\u201d|700|||||||\u201d posi\u00e7\u00e3o_texto_cor=\u201d#00B2E2\u2033 margem_personalizada=\u201d||45px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n

Trabalhando em estreita colabora\u00e7\u00e3o com o Conselho de Administra\u00e7\u00e3o, comit\u00eas, funcion\u00e1rios e volunt\u00e1rios, a Sra. Gordon \u00e9 respons\u00e1vel pelo crescimento financeiro e organizacional, pelo desenvolvimento de programas e pela gest\u00e3o di\u00e1ria da The Progeria Research Foundation.<\/p>\n

A Sra. Gordon \u00e9 formada pela Tufts University e pela Northeastern University School of Law. Antes de ser cofundadora da The Progeria Research Foundation, ela exerceu advocacia em Massachusetts e na Fl\u00f3rida, especializando-se em lit\u00edgios civis.<\/p>\n

Localmente, ela \u00e9 presidente do Peabody Rotary Club e atua no Peabody Board of Registrars. A Sra. Gordon foi reconhecida por suas realiza\u00e7\u00f5es por meio do pr\u00eamio Business and Professional Women of the Year Award do North of Boston para organiza\u00e7\u00f5es sem fins lucrativos, sendo nomeada Community Hero pelo Jewish Family Services e recebendo o pr\u00eamio Mary Upton Ferrin por lideran\u00e7a. Sob sua gest\u00e3o como presidente fundadora e diretora executiva da PRF, a PRF recebeu a cobi\u00e7ada classifica\u00e7\u00e3o Charity Navigator de 4 estrelas nos \u00faltimos 9 anos, e a PRF recebeu o pr\u00eamio Paul G. Rogers Distinguished Organization Advocacy Award da Research!America por trazer a progeria da obscuridade para a vanguarda da pesquisa translacional bem-sucedida.<\/p>\n

A Sra. Gordon mora em Peabody, Massachusetts, com seu marido Rich Reed, suas filhas Nadia e Svetlana e seus cachorros Fred e Jack.<\/p>\n

[\/et_pb_team_member][et_pb_team_member name=\u201dLeslie Gordon, MD, PhD\u201d position=\u201dDiretora M\u00e9dica da PRF\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Lelsiesp.jpg\u201d admin_label=\u201dLeslie Gordon, MD, PhD\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.21.0\u2033 position_font=\u201d|700|||||||\u201d position_text_color=\u201d#00B2E2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d]<\/p>\n

Leslie Gordon \u00e9 cofundadora da The Progeria Research Foundation e atua como Diretora M\u00e9dica volunt\u00e1ria da organiza\u00e7\u00e3o. A Dra. Gordon \u00e9 a Investigadora Principal dos programas PRF em andamento para a Progeria, incluindo o PRF Registro Internacional de Prog\u00e9ria<\/a>,\u00a0Banco de dados m\u00e9dicos e de pesquisa<\/a>,\u00a0Banco de C\u00e9lulas e Tecidos<\/a>, e o\u00a0Programa de Diagn\u00f3stico Gen\u00e9tico<\/a>. Ela presidiu 11 reuni\u00f5es cient\u00edficas internacionais financiadas pelo National Institutes of Health sobre Progeria. Ela \u00e9 professora de pesquisa pedi\u00e1trica no Hasbro Children's Hospital e na Alpert Medical School da Brown University e cientista pesquisadora no Women & Infants Hospital em Providence, RI. Ela \u00e9 pesquisadora associada em anestesia na Harvard Medical School e cientista s\u00eanior da equipe \u2013 professora associada no Boston Children's Hospital.<\/p>\n

A Dra. Gordon abriu caminho para encontrar tratamentos e a cura para aqueles afetados pela Progeria. Ela foi coautora da descoberta do gene para a Progeria em 2003 em Natureza<\/em>, autor principal do estudo de descoberta do tratamento da Prog\u00e9ria de 2012 em Revista da Associa\u00e7\u00e3o M\u00e9dica Americana (JAMA). <\/em>Ela foi co-presidente de quatro Ensaios cl\u00ednicos de medicamentos Progeria<\/a> para crian\u00e7as com Prog\u00e9ria no Hospital Infantil de Boston.<\/p>\n

A Dra. Gordon obteve seu diploma de gradua\u00e7\u00e3o pela Universidade de New Hampshire e seu mestrado, doutorado e doutorado pela Universidade Brown.<\/p>\n

[\/et_pb_team_member][et_pb_team_member name=\u201dScott D. Berns, MD, MPH, FAAP\u201d position=\u201dPresidente, Conselho de Administra\u00e7\u00e3o\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Scott-Berns.jpg\u201d admin_label=\u201dScott D. Berns, MD, MPH, FAAP\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.21.0\u2033 position_font=\u201d|700|||||||\u201d position_text_color=\u201d#00B2E2\u2033 custom_margin=\u201d||45px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n

Depois de trabalhar por 14 anos no Escrit\u00f3rio Nacional da March of Dimes, onde foi vice-presidente s\u00eanior de programas de cap\u00edtulos e vice-diretor m\u00e9dico, em outubro de 2015 o Dr. Berns se tornou presidente e CEO do NICHQ (Instituto Nacional para Qualidade da Sa\u00fade Infantil), uma organiza\u00e7\u00e3o independente e sem fins lucrativos que trabalha para melhorar a sa\u00fade das crian\u00e7as.<\/p>\n

Scott \u00e9 um pediatra certificado e m\u00e9dico de emerg\u00eancia pedi\u00e1trica. Ele \u00e9 professor cl\u00ednico de pediatria na Warren Alpert Medical School da Brown University e professor cl\u00ednico de servi\u00e7os de sa\u00fade, pol\u00edtica e pr\u00e1tica na Brown School of Public Health em Providence, RI. Ele obteve um mestrado em sa\u00fade p\u00fablica pela Harvard School of Public Health com concentra\u00e7\u00e3o em sa\u00fade, pol\u00edtica e gest\u00e3o, e concluiu uma bolsa de um ano da Casa Branca, onde atuou como assistente especial do Secret\u00e1rio de Transporte dos EUA.<\/p>\n

Scott recebeu o Pr\u00eamio Willis Wingert de excel\u00eancia em pesquisa em medicina de emerg\u00eancia pedi\u00e1trica da Academia Americana de Pediatria, um pr\u00eamio nacional da Associa\u00e7\u00e3o Nacional Perinatal, um pr\u00eamio de servi\u00e7o de sa\u00fade p\u00fablica do Departamento de Transporte dos EUA e o Pr\u00eamio Impacto de 2015 da White House Fellows Foundation & Association.<\/p>\n

[et_pb_team_member name=\u201dCarlos\u201d position=\u201dEmbaixador da PRF\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/03\/Carlos-WhatsApp-from-Tatiana-3-12-25.jpeg\u201d admin_label=\u201dCarlos\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.4\u2033 position_font=\u201d|700|||||||\u201d position_text_color=\u201d#00B2E2\u2033 custom_margin=\u201d||45px\u201d hover_enabled=\u201d0\u2033 global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n

Carlos atua como embaixador jovem da PRF, compartilhando a perspectiva \u00fanica de sua jornada com Progeria por meio de v\u00e1rias oportunidades de m\u00eddia. Diagnosticado com Progeria aos 4 anos, <\/span>ele sempre gravitou em torno de brinquedos que envolviam constru\u00e7\u00e3o e constru\u00e7\u00e3o. <\/span>Carlos \u00e9 mais conhecido por ser incrivelmente gentil e inteligente, e sempre colocar um sorriso no rosto das pessoas com seu calor e humor. Hoje, ele est\u00e1 na 9\u00aa s\u00e9rie, onde suas mat\u00e9rias favoritas s\u00e3o Ci\u00eancias e Hist\u00f3ria, com planos de se formar em ci\u00eancias ou direito. Carlos sempre teve uma personalidade muito ousada e forte, trabalhando duro em tudo que ele coloca em sua mente e nunca desistindo de seus sonhos.<\/span><\/p>\n

[et_pb_team_member][et_pb_team_member name=\u201dEm mem\u00f3ria do embaixador da PRF e pesquisador de progeria, Sammy Basso\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2021\/08\/Sammybasso-headshot.jpg\u201d admin_label=\u201dEm mem\u00f3ria de Sammy Basso\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 position_font=\u201d|700|||||||\u201d position_text_color=\u201d#00B2E2\u2033 custom_margin=\u201d||45px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n

Sammy Basso era conhecido e adorado em todo o mundo como porta-voz da PRF e da comunidade Progeria. Ele faleceu em outubro de 2024 aos 28 anos, a pessoa mais velha conhecida a viver com Progeria cl\u00e1ssica.<\/p>\n

Nascido em 1995, Sammy foi diagnosticado com Progeria aos dois anos de idade, servindo como porta-voz da Associa\u00e7\u00e3o Italiana Sammy Basso para Progeria desde os dez anos de idade. Em 2007, Sammy foi um dos primeiros a participar dos ensaios cl\u00ednicos da PRF, testando o medicamento lonafarnib, agora aprovado pela FDA, como o primeiro tratamento para Progeria. Em 2014, ele foi destaque no document\u00e1rio da National Geographic \u201cIl Viaggio di Sammy\u201d (as viagens de Sammy), que narrou sua viagem dos sonhos: viajar pela Rota 66 nos EUA, de Chicago a Los Angeles, com seus pais e amigos.<\/u><\/u><\/p>\n

Em 2018, Sammy se formou na Universidade de P\u00e1dua com um diploma em Ci\u00eancias Naturais e apresentou uma tese sobre uma abordagem de edi\u00e7\u00e3o gen\u00e9tica em camundongos HGPS. Mais tarde naquele ano, ele foi premiado como Cavaleiro da Ordem do M\u00e9rito da Rep\u00fablica Italiana, por sua pesquisa aprofundada em defici\u00eancias e sua parceria com o governo italiano. Em 2020, Sammy se tornou membro da for\u00e7a-tarefa regional e nacional do Veneto para divulga\u00e7\u00e3o de informa\u00e7\u00f5es sobre a COVID-19 (recursos cient\u00edficos e de influenciadores). Em 2021, Sammy se formou com um segundo diploma em Biologia Molecular com uma tese sobre a interse\u00e7\u00e3o de Lamin A e Interleucina-6, uma abordagem para tratar Progeria visando a prote\u00edna t\u00f3xica, conhecida como progerina. <\/u><\/u><\/u><\/u>Ou\u00e7a Sammy em um painel no STAT Breakthrough Science Summit de 2021 aqui<\/a>.\u200b<\/p>\n

Guardamos com carinho as lembran\u00e7as do extraordin\u00e1rio entusiasmo de Sammy pela vida, do seu otimismo, da sua gentileza e do seu brilhantismo enquanto fazemos o que ele gostaria que fiz\u00e9ssemos: continuar nossa luta pela cura.<\/p>\n

[\/et_pb_team_member][et_pb_team_member name=\u201dEm mem\u00f3ria de John Tacket, o primeiro embaixador jovem da PRF\u201d image_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/john.jpg\u201d admin_label=\u201dEm mem\u00f3ria de John Tacket\u201d module_class=\u201dprf-person-module\u201d _builder_version=\u201d4.16\u2033 custom_margin=\u201d||45px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n

John Tacket, de 16 anos, o primeiro Embaixador Jovem da PRF, faleceu na quarta-feira, 3 de mar\u00e7o de 2004. John era uma pessoa incr\u00edvel que nunca deixou sua condi\u00e7\u00e3o desaceler\u00e1-lo. Entre suas atividades escolares, trabalho e paix\u00e3o pela bateria, ele gostava de conversar com outras pessoas, especialmente crian\u00e7as, sobre a Progeria porque sentia que era importante que as pessoas fossem educadas sobre isso. John foi um membro-chave do painel que anunciou a descoberta do gene da Progeria em abril de 2003 em Washington, DC. Ele respondeu \u00e0s perguntas dos rep\u00f3rteres e comentou que foi um momento emocionante para ele e seus amigos. Estamos orgulhosos de ter conhecido John e a PRF \u00e9 eternamente grata por suas contribui\u00e7\u00f5es para aumentar a conscientiza\u00e7\u00e3o sobre a Progeria e o trabalho da PRF. Ele foi uma inspira\u00e7\u00e3o para todos n\u00f3s. John far\u00e1 muita falta.<\/p>\n

Clique aqui para ver uma entrevista com John, feita quando ele tinha 13 anos.<\/a><\/p>\n

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para o nosso<\/h2>\n

Atualiza\u00e7\u00f5es!<\/h2>\n

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Juntos, n\u00f3s<\/h2>\n

VAI<\/em><\/h2>\n

encontre a cura!<\/h2>\n

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PRF Spokespeople<\/a><\/h1>\r\n