{"id":4746,"date":"2016-10-20T20:09:43","date_gmt":"2016-10-20T20:09:43","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?page_id=406"},"modified":"2026-03-27T08:21:18","modified_gmt":"2026-03-27T12:21:18","slug":"meet-the-kids","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/pt\/meet-the-kids\/","title":{"rendered":"Conhe\u00e7a as crian\u00e7as"},"content":{"rendered":"<p>[et_pb_section fb_built=\u201d1\u2033 largura_completa=\u201dligado\u201d disabled_on=\u201ddesligado|desligado|desligado\u201d _builder_version=\u201d4.16\u2033 preenchimento_personalizado=\u201d0px|0px|0px|0|falso|falso\u201d border_width_bottom=\u201d55px\u201d border_color_bottom=\u201d#29327a\u201d bloqueado=\u201ddesligado\u201d global_colors_info=\u201d{}\u201d][et_pb_cabe\u00e7alho_completo_de_largura_fundo_sobreposi\u00e7\u00e3o_cor=\u201drgba(0,0,0,0)\u201d _builder_version=\u201d4.22.1\u2033 fonte_t\u00edtulo=\u201d||||||||\u201d title_font_size=\u201d55\u2033 background_color=\u201d#29327a\u201d background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/bubbles-header.jpg\u201d background_position=\u201dbottom_right\u201d custom_padding=\u201d11.5vw||11.5vw||true\u201d custom_padding_tablet=\u201d\u201d custom_padding_phone=\u201d|56px||\u201d custom_padding_last_edited=\u201don|desktop\u201d title_font_size_tablet=\u201d45px\u201d title_font_size_phone=\u201d40px\u201d title_font_size_last_edited=\u201don|phone\u201d z_index_tablet=\u201d500\u2033 custom_css_main_element=\u201dbackground-position: center !important;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<h1>Conhe\u00e7a as crian\u00e7as<\/h1>\n<h1>&amp; Jovens Adultos<\/h1>\n<p>[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 use_custom_gutter=\u201don\u201d gutter_width=\u201d1\u2033 specialty=\u201don\u201d padding_left_1=\u201d35px\u201d padding_left_2=\u201d35px\u201d padding_2_tablet=\u201d|||0px\u201d padding_2_phone=\u201d|||0px\u201d padding_2_last_edited=\u201don|desktop\u201d module_class_1=\u201dsidebar-secondary-nav\u201d module_class=\u201dhandprint-bg\u201d _builder_version=\u201d4.22.1\u2033 background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/blue-handprint-only.png\u201d parallax=\u201don\u201d parallax_method=\u201doff\u201d largura_interna=\u201d95%\u201d largura_m\u00e1xima_interna=\u201d100%\u201d preenchimento_personalizado=\u201d0|0px|54px|0px|falso|falso\u201d z_index_tablet=\u201d500\u2033 largura_da_borda_superior=\u201d10px\u201d cor_da_borda_superior=\u201d#8fd2ed\u201d use_largura_personalizada=\u201dligado\u201d largura_unit=\u201ddesligado\u201d largura_personalizada_percent=\u201d100%\u201d informa\u00e7\u00f5es_de_cores_globais=\u201d{}\u201d][coluna_et_pb tipo=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 preenchimento_personalizado=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_sidebar area=\u201det_pb_widget_area_12\u2033 disabled_on=\u201don|on|off\u201d module_class=\u201dsubpage-sidebars\u201d _builder_version=\u201d4.16\u2033 animation_style=\u201dfade\u201d z_index_tablet=\u201d500\u2033 border_width_right=\u201d5px\u201d locked=\u201doff\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_sidebar][\/et_pb_column][et_pb_column type=&#8221;3_4&#8243; 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custom_padding=&#8221;|20px|||false|false&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;500&#8243; text_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; text_text_shadow_vertical_length_tablet=&#8221;0px&#8221; text_text_shadow_blur_strength_tablet=&#8221;1px&#8221; link_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; link_text_shadow_vertical_length_tablet=&#8221;0px&#8221; link_text_shadow_blur_strength_tablet=&#8221;1px&#8221; ul_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; ul_text_shadow_vertical_length_tablet=&#8221;0px&#8221; ul_text_shadow_blur_strength_tablet=&#8221;1px&#8221; ol_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; ol_text_shadow_vertical_length_tablet=&#8221;0px&#8221; ol_text_shadow_blur_strength_tablet=&#8221;1px&#8221; quote_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; quote_text_shadow_vertical_length_tablet=&#8221;0px&#8221; quote_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_2_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_2_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_2_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_3_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_3_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_3_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_4_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_4_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_4_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_5_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_5_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_5_text_shadow_blur_strength_tablet=&#8221;1px&#8221; header_6_text_shadow_horizontal_length_tablet=&#8221;0px&#8221; header_6_text_shadow_vertical_length_tablet=&#8221;0px&#8221; header_6_text_shadow_blur_strength_tablet=&#8221;1px&#8221; box_shadow_horizontal_tablet=&#8221;0px&#8221; box_shadow_vertical_tablet=&#8221;0px&#8221; box_shadow_blur_tablet=&#8221;40px&#8221; box_shadow_spread_tablet=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<\/p>\n<h4>Bem-vindo \u00e0 nossa crescente fam\u00edlia Progeria<\/h4>\n<p>Abaixo, compartilhamos com voc\u00ea um vislumbre da vida de algumas crian\u00e7as e jovens com Prog\u00e9ria ao redor do mundo. Voc\u00ea descobrir\u00e1 o qu\u00e3o inteligentes, en\u00e9rgicos, talentosos e ambiciosos essas crian\u00e7as e jovens s\u00e3o \u2013 todos com esperan\u00e7as e sonhos de um futuro brilhante. Esperamos que suas hist\u00f3rias inspirem voc\u00ea a apoiar a PRF, para que esses sonhos se tornem realidade.<\/p>\n<p>Em mar\u00e7o de 2026, estes eram os locais onde viviam 157 crian\u00e7as e jovens adultos com S\u00edndrome de Progeria de Hutchinson-Gilford (HGPS), todos com uma muta\u00e7\u00e3o produtora de progerina no gene LMNA; e 84 pessoas na categoria de laminopatia progeroide (PL), que t\u00eam muta\u00e7\u00f5es na via da lamina, mas n\u00e3o produzem progerina; num total de 52 pa\u00edses.<\/p>\n<p>[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=\u201d1_2,1_2\u2033 custom_padding_last_edited=\u201don|desktop\u201d padding_left_right_link_1=\u201dfalse\u201d padding_left_right_link_2=\u201dtrue\u201d _builder_version=\u201d4.16\u2033 custom_margin=\u201d|10px|||false|false\u201d custom_padding=\u201d39.0156px|0px|0px|0px|false|false\u201d custom_padding_tablet=\u201d0px|35px||35px\u201d custom_padding_phone=\u201d0px||0px\u201d animation_direction=\u201dright\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner tipo=\u201d1_2\u2033 tipo_de_coluna_de_especialidade_salva=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 preenchimento_personalizado=\u201d|20px||\u201d tablet_de_preenchimento_personalizado=\u201d|0px||0px\u201d telefone_de_preenchimento_personalizado=\u201d||30px\u201d \u00faltima_edi\u00e7\u00e3o_personalizada=\u201dno|telefone\u201d global_colors_info=\u201d{}\u201d padr___hover=\u201d|||\u201d][et_pb_text _builder_version=\u201d4.27.2\u2033 margem_personalizada=\u201d||15px\u201d tablet_de_preenchimento_personalizado=\u201d\u201d telefone_de_preenchimento_personalizado=\u201d\u201d \u00faltima_edi\u00e7\u00e3o_personalizada=\u201dno|\u00e1rea_de_trabalho\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<h4>A vida segundo Sam<\/h4>\n<p>Abaixo, d\u00ea uma pequena olhada na vida de algumas das crian\u00e7as apresentadas no document\u00e1rio da HBO <strong><a href=\"https:\/\/www.progeriaresearch.org\/pt\/life-according-to-sam\/\">A vida segundo Sam<\/a><\/strong>, e muitos outros do mundo todo!<\/p>\n<p>[\/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|20px|30px|20px\u201d custom_padding_tablet=\u201d|0px||0px\u201d custom_padding_phone=\u201d\u201d custom_padding_last_edited=\u201don|desktop\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_video src=\u201dhttps:\/\/www.youtube.com\/watch?v=aOB3ltOeK9I\u201d image_src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/VideoThumbnail.png\u201d _builder_version=\u201d4.22.1\u2033 custom_margin_tablet=\u201d\u201d custom_margin_phone=\u201d||15px\u201d custom_margin_last_edited=\u201dno|\u00e1rea de trabalho\u201d custom_padding_tablet=\u201d\u201d custom_padding_phone=\u201d\u201d custom_padding_last_edited=\u201dno|\u00e1rea de trabalho\u201d animation_direction=\u201ddireita\u201d global_colors_info=\u201d{}\u201d]<br \/>\n[\/et_pb_video][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner _builder_version=&#8221;4.22.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.22.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2026\/03\/March-2026-Map.jpg&#8221; title_text=&#8221;March 2026 Map&#8221; align=&#8221;center&#8221; admin_label=&#8221;Map&#8221; _builder_version=&#8221;4.27.5&#8243; vertical_offset_tablet=&#8221;0&#8243; horizontal_offset_tablet=&#8221;0&#8243; width=&#8221;100%&#8221; module_alignment=&#8221;center&#8221; custom_margin=&#8221;0px|0px|0px||false|false&#8221; custom_padding=&#8221;|20px|||false|false&#8221; hover_enabled=&#8221;0&#8243; z_index_tablet=&#8221;0&#8243; box_shadow_horizontal_tablet=&#8221;0px&#8221; box_shadow_vertical_tablet=&#8221;0px&#8221; box_shadow_blur_tablet=&#8221;40px&#8221; box_shadow_spread_tablet=&#8221;0px&#8221; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_image][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=&#8221;undefined&#8221; custom_padding_last_edited=&#8221;on|phone&#8221; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;12px|35px|39.0156px|0px|false|false&#8221; custom_padding_tablet=&#8221;|35px||35px||true&#8221; custom_padding_phone=&#8221;&#8221; border_width_top=&#8221;10px&#8221; border_color_top=&#8221;#8fd2ed&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column_inner type=&#8221;undefined&#8221; saved_specialty_column_type=&#8221;3_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.24.3&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Abaixo, conhe\u00e7a as crian\u00e7as apresentadas no document\u00e1rio da HBO, <a href=\"https:\/\/www.progeriaresearch.org\/pt\/life-according-to-sam\/\"><strong>A vida segundo Sam<\/strong>\u00a0<\/a>(filmado de 2010 a 2012) \u2013 Sam, Devin, Megan, Sammy e Zoey. Ent\u00e3o d\u00ea uma olhada nas vidas de algumas das outras crian\u00e7as e jovens adultos que nos mant\u00eam motivados todos os dias.<\/p>\n<p>&nbsp;<\/p>\n<p>[\/et_pb_text][et_pb_team_member nome=\u201dSam Berns\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Sam_Brochure-2010MTK.jpg\u201d admin_label=\u201dSam\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Sam faleceu em 10 de janeiro de 2014. Ele tinha 17 anos. O filme mostra Sam com idades entre 13 e 15 anos, e somos muito gratos que este document\u00e1rio premiado permitir\u00e1 que o mundo conhe\u00e7a esta pessoa extraordin\u00e1ria e o legado de amor, esperan\u00e7a e inspira\u00e7\u00e3o que ele presenteou ao mundo. Sam gostava de muitas coisas, incluindo m\u00fasica, hist\u00f3rias em quadrinhos e assistir seus amados times esportivos de Boston jogarem. Ele alcan\u00e7ou as mais altas honrarias acad\u00eamicas, foi l\u00edder de se\u00e7\u00e3o de percuss\u00e3o em sua banda do ensino m\u00e9dio e alcan\u00e7ou o posto de Eagle Scout no Boy Scouts of America.<\/p>\n<p>Sam come\u00e7ou a falar publicamente aos 4 anos de idade, logo ap\u00f3s seus pais fundarem a The Progeria Research Foundation, inclusive em dois\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/pt\/tedx-talks\/\" target=\"_blank\" rel=\"noopener noreferrer\">Confer\u00eancias TEDx<\/a>. Exatamente uma d\u00e9cada depois de proferir sua palestra de outubro de 2013 sobre sua filosofia para uma vida feliz, a palestra superou <strong>100 milh\u00f5es de visualiza\u00e7\u00f5es em v\u00e1rios canais<\/strong>, entre TED.com e <a href=\"https:\/\/www.youtube.com\/watch?v=36m1o-tM05g\">TEDx<\/a>, e tweets di\u00e1rios sobre como sua palestra inspirou as pessoas continuam. Sam foi entrevistado em programas nacionais de televis\u00e3o e r\u00e1dio, incluindo ABC Primetime e NPR, impressionando seu p\u00fablico com seu comportamento articulado, espirituoso e inteligente. Por meio de <a href=\"https:\/\/www.progeriaresearch.org\/pt\/life-according-to-sam\/\">A vida segundo Sam<\/a> e sua palestra atemporal no TEDx, ele continua a inspirar todos n\u00f3s na PRF, assim como milh\u00f5es de pessoas ao redor do mundo.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dDevin\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2022\/11\/Devin.png\u201d admin_label=\u201dDevin\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Durante as filmagens de <i>A vida segundo Sam<\/i>, o residente canadense Devin Scullion tinha 14 anos. Mais do que tudo, Devin gostava de voar e de qualquer coisa relacionada a avi\u00f5es e \u00e0 mec\u00e2nica de como eles funcionavam. Devin tamb\u00e9m era um grande f\u00e3 de futebol e adorava torcer pelo Hamilton Ticats. Ele come\u00e7ou a tomar lonafarnib por meio do teste cl\u00ednico de medicamentos da PRF aos 11 anos. Infelizmente, Devin faleceu em 22 de janeiro de 2017, aos 20 anos. Nas palavras de sua m\u00e3e, &quot;Fazer parte do teste definitivamente ajudou a prolongar sua vida; sem a PRF, n\u00e3o o ter\u00edamos por tanto tempo.&quot;<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dMegan\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MeghanN2023.png\u201d admin_label=\u201dMegan\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Durante as filmagens de\u00a0<em>A vida segundo Sam,<\/em> ela tinha 10 anos. Megan tem agora 24 e est\u00e1 prosperando. Ela ama andar a cavalo e gosta de fazer joias para todos os seus amigos.<\/p>\n<p>Megan foi a primeira crian\u00e7a a tomar o medicamento Zokinvy (lonafarnib) em junho de 2007 \u2013 foi um momento hist\u00f3rico! Quando a agenda permite, ela vem a Boston para seus tratamentos de teste com seu amigo Merlin Waldron. Os dois est\u00e3o juntos em Boston na maioria de suas visitas de teste. Megan e sua fam\u00edlia querem que voc\u00ea saiba que eles t\u00eam total f\u00e9 e confian\u00e7a em todos os pesquisadores e m\u00e9dicos e, claro, na PRF: <em>\u201cMas aqueles que esperam no Senhor receber\u00e3o sua for\u00e7a; voar\u00e3o sobre asas como \u00e1guias; correr\u00e3o e n\u00e3o se cansar\u00e3o, caminhar\u00e3o e n\u00e3o se fatigar\u00e3o.\u201d Isa\u00edas 40:31<\/em><\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dSammy Basso\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/11\/Sammy-for-website.jpg\u201d admin_label=\u201dSammy\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 posi\u00e7\u00e3o_font=\u201d|700|||||||\u201d posi\u00e7\u00e3o_texto_color=\u201d#00B2E2\u2033 margem_personalizada=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 posi\u00e7\u00e3o_personalizada_css=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>A pessoa mais velha conhecida com Progeria cl\u00e1ssica, o residente italiano Sammy Basso faleceu em outubro de 2024 aos 28 anos. Sammy era conhecido e adorado em todo o mundo como um porta-voz da PRF e da comunidade Progeria. Ele e seus amigos adoravam criar projetos que impactassem a sociedade de forma positiva, como ajudar pessoas necessitadas ou espalhar a conscientiza\u00e7\u00e3o para grandes causas (confira o trabalho deles com <a href=\"https:\/\/www.facebook.com\/sammyrunsbrenta\/videos\/2395154744030051\/?v=2395154744030051\" target=\"_blank\" rel=\"noopener\">Sammy corre Brenta<\/a>, por exemplo!) Em 2014, Sammy foi destaque em uma s\u00e9rie da National Geographic italiana, <em>A Viagem de Sammy<\/em>, que narrou sua viagem dos sonhos: viajar pela Rota 66 nos EUA de Chicago a Los Angeles com seus pais, Laura e Amerigo, e o amigo Riccardo. Os pais de Sammy fundaram a <a href=\"https:\/\/www.facebook.com\/groups\/40213564765\/#_=_\">Associa\u00e7\u00e3o Italiana Progeria Sammy Basso<\/a> para conscientizar, financiar pesquisas e fornecer servi\u00e7os de apoio \u00e0s fam\u00edlias italianas afetadas pela Prog\u00e9ria.<\/p>\n<p>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.\u00a0<u><\/u><u><\/u><u><\/u><u><\/u>Ou\u00e7a Sammy em um painel no STAT Breakthrough Science Summit de 2021\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=HP8rbSm2gv0&amp;t=2s\" target=\"_blank\" rel=\"noopener\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.youtube.com\/watch?v%3DHP8rbSm2gv0%26t%3D2s&amp;source=gmail&amp;ust=1630071558752000&amp;usg=AFQjCNExV968PKWOQ2PeCFNcRJvem3E2Eg\">aqui<\/a>.\u200b<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dZoey\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/ZoeyMTK.png\u201d admin_label=\u201dZoey\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Durante as filmagens de <em>A vida segundo Sam<\/em>, ela tinha cerca de um ano e agora tem 15! Ela ama a escola e tem muitos amigos! Zoey ama desenhar, escrever, ser boba, estar com suas melhores amigas, ajudar sua m\u00e3e a cozinhar e ela ama especialmente a aula de gin\u00e1stica!<\/p>\n<p>Zoey tamb\u00e9m adora m\u00fasica, canto e dan\u00e7a. Ela tem dois irm\u00e3os mais velhos, Aidan e Gavin. Eles se comportam como irm\u00e3os t\u00edpicos \u2013 eles brincam muito juntos, mas \u00e0s vezes discutem sem motivo.<\/p>\n<p>Em julho de 2013, Zoey come\u00e7ou a tomar lonafarnib como parte do\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/pt\/clinical-trials\/\" target=\"_blank\" rel=\"noopener noreferrer\">Expans\u00e3o de teste<\/a>, e em abril de 2016, ela e sua amiga Carly foram as primeiras a se inscrever no novo, \u00a0<a href=\"https:\/\/www.progeriaresearch.org\/pt\/clinical-trials\/\" target=\"_blank\" rel=\"noopener noreferrer\">Teste de 2 drogas<\/a>. Por muitos anos, sua fam\u00edlia liderou o Cap\u00edtulo de Nova Jersey da PRF, \u201cTeam Zoey\u201d, que fornece fundos vitais para pesquisar tratamentos adicionais e a cura. Siga Zoey em <a href=\"https:\/\/www.instagram.com\/team_zoey\/\">Instagram<\/a> e\u00a0<a href=\"https:\/\/twitter.com\/SupportTeamZoey\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a>!<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dMerlin Waldron\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Merlin2023.jpeg\u201d admin_label=\u201dMerlin Waldron\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 posi\u00e7\u00e3o_fonte=\u201d|700|||||||\u201d posi\u00e7\u00e3o_texto_cor=\u201d#00B2E2\u2033 margem_personalizada=\u201d||45px||falso|falso\u201d preenchimento_personalizado=\u201d20px||||falso|falso\u201d z_index_tablet=\u201d500\u2033 posi\u00e7\u00e3o_personalizada_css=\u201dcor: #00b2e2;\u201d largura_da_borda_topo=\u201d8px\u201d cor_da_borda_topo=\u201d#8FD2ED\u201d cores_globais_info=\u201d{}\u201d]<\/p>\n<p>Merlin \u00e9 um violoncelista e violinista talentoso, entusiasta de viagens pelo mundo, poeta e autor publicado, e se formou no Emerson College em Massachusetts em 2022 (para ter uma ideia do sucesso de seu livro, clique <a href=\"https:\/\/www.youtube.com\/watch?v=agINH6jz3Ls&amp;list=PLio7GaXoQ3Shz1IbzLF1GkugQiDI0fMwR&amp;index=54\" target=\"_blank\" rel=\"noopener\">aqui<\/a>). Por muitos anos, Merlin atuou como porta-voz da The Progeria Research Foundation em eventos como a Corrida de Rua Anual da PRF, o Workshop Cient\u00edfico Internacional da PRF e em diversas apari\u00e7\u00f5es na m\u00eddia.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dAlexandra\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/AlexandraMTK.png\u201d admin_label=\u201dAlexandra\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Alexandra \u00e9 uma menina feliz de 8 anos que gosta de ir \u00e0 escola, rir e brincar com seus colegas. Ela ama m\u00fasica e tocar instrumentos, e \u00e9 louca por dan\u00e7a! Mesmo fora da escola de dan\u00e7a, Alexandra dan\u00e7a onde quer que ou\u00e7a m\u00fasica \u2013 no carro, nas lojas, no supermercado\u2026 Ela tamb\u00e9m gosta de nadar e brincar na piscina, onde as pessoas a chamam de \u201cpeixinho\u201d. Em casa, ela est\u00e1 sempre brincando de professora com todas as suas bonecas e beb\u00eas. \u00c0 noite, antes de dormir, ela adora ler livros com seus pais e ouvir hist\u00f3rias de princesas. Ela tem muitos desejos e sonhos; um deles, conhecer Minnie Mouse, se tornou realidade h\u00e1 v\u00e1rios anos quando ela foi \u00e0 EuroDisney (casa de Minnie na Europa) e a conheceu em uma recep\u00e7\u00e3o privada onde brincaram, conversaram, dan\u00e7aram e se abra\u00e7aram. Como Alexandra \u00e9 o \u00fanico caso na Espanha, e n\u00e3o havia funda\u00e7\u00f5es espec\u00edficas para Progeria no pa\u00eds, a fam\u00edlia de Alexandra decidiu criar a sua pr\u00f3pria \u2013 \u201c<a href=\"https:\/\/www.asociacionprogeria.com\">Associa\u00e7\u00e3o Prog\u00e9ria Alexandra Peraut<\/a>\u201d \u2013 como uma forma de aumentar a conscientiza\u00e7\u00e3o e os fundos para a pesquisa da Progeria. Os pais de Alexandra foram desafiados a terminar o Challenge Madrid Triathlon (revezamento completo) para aumentar a conscientiza\u00e7\u00e3o sobre a Progeria e seus <a href=\"https:\/\/www.asociacionprogeria.com\">associa\u00e7\u00e3o<\/a> e para arrecadar fundos para pesquisa. D\u00ea uma olhada em <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/11\/Alexandra-movie-clip.mp4\">este v\u00eddeo<\/a> da fam\u00edlia cruzando a linha de chegada, e confira a sua <a href=\"https:\/\/www.instagram.com\/asociacionprogeria\/\">Instagram<\/a> e <a href=\"https:\/\/www.facebook.com\/AsociacionProgeriaAlexandraPeraut\/\">Facebook<\/a> para mais informa\u00e7\u00f5es!<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dBrennen\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Brennen-in-field.jpg\u201d admin_label=\u201dBrennen\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Brennen \u00e9 um garoto de 15 anos de Nova York. Ele \u00e9 muito ativo e ama seu cachorro e seu irm\u00e3ozinho, Owen. A fam\u00edlia e os amigos de Brennen come\u00e7aram a EQUIPE BRENNEN para ajudar a arrecadar fundos e conscientizar sobre a Progeria, e sua pequena cidade no norte do estado de Nova York se uniu em torno da fam\u00edlia. Em julho de 2014, Brennen teve seu primeiro <a href=\"https:\/\/www.progeriaresearch.org\/pt\/clinical-trials\/\">Ensaio cl\u00ednico de Progeria<\/a> visita em Boston. A m\u00e3e dele postou no Facebook o qu\u00e3o orgulhosa ela estava pela maneira como Brennen lidou com todos os testes! Continue com esse garotinho divertido e sua \u00f3tima equipe no\u00a0<a href=\"https:\/\/www.facebook.com\/TeamBrennen\" target=\"_blank\" rel=\"noopener noreferrer\">P\u00e1gina do Facebook da equipe Brennen<\/a>.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dEnzo\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Enzomtk.png\u201d admin_label=\u201dEnzo\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Enzo \u00e9 um ador\u00e1vel garoto australiano de 13 anos com um sorriso lindo e contagiante. Enzo adora construir com Legos e est\u00e1 muito interessado em aprender tudo sobre os planetas e o espa\u00e7o. Ele \u00e9 um estudante em tempo integral, onde matem\u00e1tica, ci\u00eancias e arte s\u00e3o suas mat\u00e9rias favoritas. Ele gosta de seu tempo na escola com seus amigos, onde ele \u00e9 um garoto popular! Enzo adora esportes, mas n\u00e3o \u00e9 forte o suficiente para brincar com seus colegas. Em vez disso, ele gosta de aulas semanais de nata\u00e7\u00e3o e dan\u00e7a. Ele participa todos os anos do Glenelg Christmas Pageant e do concerto de fim de ano com Dancers by Donna. Ele adora estar no palco! Seu amor pela m\u00fasica est\u00e1 aumentando a cada ano, e ele est\u00e1 planejando ter aulas de viol\u00e3o em breve. Al\u00e9m disso, Enzo adora correr. Ele participa todos os anos da City-to-Bay Fun Run em Adelaide no grupo de caminhada de 6 km. V\u00ea-lo cruzar a linha de chegada todos os anos n\u00e3o tem pre\u00e7o. Enzo construiu uma comunidade: a &#039;Equipe Enzo&#039; organiza muitas atividades de arrecada\u00e7\u00e3o de fundos para apoiar Enzo em sua jornada com a Progeria.<\/p>\n<p>Enzo foi uma das crian\u00e7as mais novas a se inscrever nos Ensaios Cl\u00ednicos da PRF, em 2015. Sua primeira visita a Boston foi em abril de 2015, aos 3 anos. Depois, ele veio em setembro de 2017 e, mais recentemente, em setembro de 2019. Enzo se inscreveu no ensaio de um medicamento para continuar tomando lonafarnib. Como pais, Catherina e Percy aprenderam a viver com o medo de que qualquer coisa possa acontecer a qualquer dia ou hora. Por outro lado, ter a PRF em suas vidas lhes deu a esperan\u00e7a de que, em vez de aproveitar Enzo por apenas 14 ou 15 anos, agora eles podem acreditar fortemente que o ver\u00e3o terminar o ensino m\u00e9dio, dirigir um carro e continuar seus estudos. Eles est\u00e3o esperan\u00e7osos de que uma cura ser\u00e1 encontrada nos pr\u00f3ximos anos!<\/p>\n<p>Veja Enzo em movimento e conhe\u00e7a sua fam\u00edlia neste <a href=\"https:\/\/m.youtube.com\/watch?v=QEUumIaxM9M\" target=\"_blank\" rel=\"noopener noreferrer\">v\u00eddeo especial<\/a>, e mantenha contato com eles em <a href=\"https:\/\/www.facebook.com\/TeamEnzoProgeria\/\">Facebook<\/a>. Voc\u00ea tamb\u00e9m pode apoiar o Team Enzo em seu <a href=\"https:\/\/www.teamenzoprogeria.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">p\u00e1gina de arrecada\u00e7\u00e3o de fundos<\/a>.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dKaylee\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Kayleebeach2024.png\u201d admin_label=\u201dDoce Kaylee\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Kaylee tem 21 anos e \u00e9 de Ohio. Quando n\u00e3o est\u00e1 estudando para ser paralegal, ela gosta de sair com amigos, dirigir sua van e viajar. Suas viagens favoritas at\u00e9 agora foram Savannah, GA, e Phoenix, AZ. Kaylee \u00e9 uma influenciadora online, celebridade local e uma garota muito ocupada. Ela foi convidada para falar no Total Package Girl Leadership Summit em outubro de 2019. Acompanhe Kaylee juntando-se a ela <a href=\"https:\/\/www.facebook.com\/groups\/111892979356\/\" target=\"_blank\" rel=\"noopener noreferrer\">Grupo do Facebook!<\/a><\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dLindsay\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/LindsayR2024.jpeg\u201d admin_label=\u201dLindsay\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Lindsay \u00e9 uma mulher de 20 anos, p\u00e9 no ch\u00e3o e despreocupada, de Michigan, que foi apresentada com Hayley e Kaylee no Barbara Walters 20\/20 Special de 2010. <a href=\"https:\/\/abcnews.go.com\/Health\/barbara-walters-special-70-resources-progeria-information\/story?id=14185425\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/abcnews.go.com\/Health\/barbara-walters-special-70-resources-progeria-information\/story?id%3D14185425&amp;source=gmail&amp;ust=1599057849436000&amp;usg=AFQjCNFL6t163_Ywh2h6I2JJtLANUELn-Q\">&#039;7 indo para os 70&#039;<\/a>. Hoje em dia, ela est\u00e1 arrasando no Albion College!! Em maio de 2024, ela recebeu o reconhecimento por ter um dos maiores GPAs entre a turma de 2026! Lindsay gosta de sair com os amigos quando n\u00e3o est\u00e1 estudando, ouvindo m\u00fasica, lendo, escrevendo ou desenhando.<\/p>\n<p>Como caloura na Challenging Borders International Human Rights Conference no Albion College em abril de 2023, ela apresentou as diferentes pol\u00edticas em condados santu\u00e1rios nos EUA, interagindo com pessoas de 9 pa\u00edses e 18 universidades. Foi realmente uma experi\u00eancia cultural!!<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dMichiel e Amber\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MichielAmberMTK.png\u201d admin_label=\u201dMichiel e Amber\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Conhe\u00e7a Michiel, 26, que adora snowboard e corrida de kart, jogos de computador, sair com os amigos e \u201cThe Big Bang Theory\u201d. Sua irm\u00e3 de 18 anos, Amber, adora brincar de cavalo com Michiel e adora gin\u00e1stica, dan\u00e7a, a cor verde e seu celular. Leia sobre esses irm\u00e3os muito pr\u00f3ximos da B\u00e9lgica em seu <a href=\"https:\/\/www.progeria.be\/?lang=en\">site multil\u00edngue<\/a>\u00a0criado com amor por seus pais. Aprenda atrav\u00e9s do di\u00e1rio detalhado sobre suas experi\u00eancias vivendo com Progeria, e a vida deste menino e menina maravilhosos que trazem tanta alegria a todos que os conhecem. Voc\u00ea tamb\u00e9m pode manter contato com eles em\u00a0<a href=\"https:\/\/www.facebook.com\/pages\/Ik-ben-michiel\/204907719690404\">P\u00e1gina do Michiel no Facebook <\/a>ou em <a href=\"https:\/\/www.instagram.com\/amber.vandeweert\/\">P\u00e1gina do Instagram da Amber<\/a>.<\/p>\n<p>Aprendemos muito sobre Michiel e Amber em nosso primeiro jogo de \u201c<a href=\"https:\/\/www.youtube.com\/watch?v=WerLe5ApRwc\" target=\"_blank\" rel=\"noopener noreferrer\">Confronto entre irm\u00e3os<\/a>\u201d. Eles n\u00e3o concordaram muito, mas ficou claro que Amber mant\u00e9m o quarto mais arrumado e que ambos os irm\u00e3os sonham em viajar. A fam\u00edlia escolheu o Cambridgeside Galleria Mall para o local da filmagem, o que fez sentido depois de ouvir que uma das atividades favoritas de Amber \u00e9 fazer compras! Para uma vis\u00e3o mais detalhada da vida de Michiel e Amber, confira o <a href=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/09\/2019-Newletter-For-Web.pdf\">Boletim PRF 2019<\/a>, apresentando uma breve entrevista com a dupla de irm\u00e3os.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dNathan &amp; Bennett\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/NathanBennettMTK.png\u201d admin_label=\u201dNathan &amp; Bennett\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Nathan e Bennett s\u00e3o irm\u00e3os com Progeria que vivem fora da Filad\u00e9lfia, PA com seus pais, a irm\u00e3 mais velha Libby e a cadela Ruby. Ambos t\u00eam uma forma rara de Progeria chamada Displasia Mandibuloacral (MAD) e t\u00eam condi\u00e7\u00f5es m\u00e9dicas semelhantes \u00e0s de crian\u00e7as com Progeria cl\u00e1ssica. Nathan tem 19 anos e Bennett tem 15. Nathan \u00e9 muito cauteloso, respons\u00e1vel e com mentalidade acad\u00eamica. Ele toca violino, trompete e ama qualquer coisa relacionada \u00e0 ci\u00eancia. Bennett \u00e9 mais &quot;despreocupado&quot; e se sai bem por causa de seu sorriso encantador e personalidade boba. Ele ama qualquer coisa relacionada a esportes e joga futebol por horas ao ar livre, independentemente do clima! Ambos s\u00e3o obcecados por Star Wars, Minecraft e, claro, seus dispositivos eletr\u00f4nicos! Apesar das diferen\u00e7as de idade e personalidade, esses dois s\u00e3o melhores amigos! Veja sua linda irmandade\/amizade e conhe\u00e7a sua fam\u00edlia neste <a href=\"https:\/\/www.facebook.com\/specialbooksbyspecialkids\/videos\/1140314192737226\/\">entrevista emocionante<\/a>\u00a0por\u00a0<em>Livros especiais para crian\u00e7as especiais<\/em>. Para mais informa\u00e7\u00f5es sobre esta dupla din\u00e2mica, visite seu\u00a0<a href=\"https:\/\/www.facebook.com\/pg\/nathanandbennett\/about\/?ref=page_internal\">P\u00e1gina do Facebook<\/a>.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dZein\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/Zein.png\u201d admin_label=\u201dZein\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Zein \u00e9 a \u00fanica crian\u00e7a no Egito identificada pelo nome e geneticamente testada para Prog\u00e9ria. Ele tem 7 anos e faz parte do teste de monoterapia da PRF. Em setembro de 2019, sua viagem a Boston para o teste foi a primeira vez que ele deixou o Egito! Zein gosta de passar tempo com sua fam\u00edlia, ler livros com seu irm\u00e3o mais velho, Adam, e cantar e dan\u00e7ar. Todos amam Zein quando o conhecem, porque ele \u00e9 t\u00e3o doce e amig\u00e1vel. Ele traz alegria para toda a sua fam\u00edlia e amigos. Sua m\u00e3e Dina menciona que ela est\u00e1 &quot;t\u00e3o orgulhosa de ter um filho como ele&quot;. Saiba mais sobre ele <a href=\"https:\/\/www.youtube.com\/watch?v=fLySH7FqPq4\">aqui<\/a>.<\/p>\n<p>[\/et_pb_team_member][\/et_pb_column_inner][\/et_pb_row_inner][et_pb_row_inner column_structure=\u201dundefined\u201d custom_padding_last_edited=\u201don|phone\u201d _builder_version=\u201d4.27.2\u2033 custom_padding=\u201d40px|35px|39.0156px|0px|false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d border_width_top=\u201d10px\u201d border_color_top=\u201d#8fd2ed\u201d global_colors_info=\u201d{}\u201d][et_pb_column_inner type=\u201dundefined\u201d saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 preenchimento personalizado = &quot;|||&quot; informa\u00e7\u00f5es_de_cores_globais = &quot;{}&quot; preenchimento personalizado__hover = &quot;|||&quot;][et_pb_text _builder_version = &quot;4.27.2&quot; margem_personalizada = &quot;3px || 5px || falso | falso&quot; preenchimento personalizado = &quot;3px || 10px || falso | falso&quot; informa\u00e7\u00f5es_de_cores_globais = &quot;{}&quot;]<\/p>\n<h3>Em mem\u00f3ria amorosa\u2026<\/h3>\n<p>Voc\u00ea pode ter lido sobre essas crian\u00e7as e jovens adultos especiais \u2013 cada um dos quais causou um grande impacto de uma forma \u00fanica\u2026<\/p>\n<p>[\/et_pb_text][et_pb_team_member nome=\u201dAdalia Rose\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Adalia-with-butterflyMTK.jpg\u201d admin_label=\u201dAdalia\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Adalia, uma adolescente do Texas com uma <a href=\"https:\/\/www.youtube.com\/@AdaliaRoseBudd\">personalidade do tamanho do Texas<\/a> tamb\u00e9m faleceu em janeiro de 2022 aos 15 anos. Ela adorava cantar, dan\u00e7ar e brincar de se vestir. Ela era amplamente conhecida por seus v\u00eddeos divertidos e relacionamento especial com sua m\u00e3e, Natalia \u2013 sua <a href=\"https:\/\/www.facebook.com\/AdaliaRose\">12 milh\u00f5es de seguidores no Facebook<\/a> s\u00e3o a prova disso!<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dBeandri\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/08\/Beandi2024.png\u201d admin_label=\u201dBeandri\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.0\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p><span>Beandri \u00e9 da \u00c1frica do Sul e far\u00e1 19 anos em novembro de 2024. Ela \u00e9 uma de quatro irm\u00e3os, com tr\u00eas irm\u00e3os mais velhos. Beandri ama m\u00fasica afric\u00e2ner e faz as pessoas mais conscientes da Progeria ao fazer uma transmiss\u00e3o ao vivo no TikTok. Ela \u00e9 conhecida como BB no TikTok. Ela obteve certificados em creche e psicologia infantil e recentemente tamb\u00e9m concluiu seus estudos de coach de vida. Ela ama seus cachorros e Angel, seu macaco sagui. Ela \u00e9 muito positiva, embora tenha passado por muitas cirurgias. Sua fam\u00edlia tem uma p\u00e1gina no Facebook para ela,<\/span>\u201c<a href=\"https:\/\/www.facebook.com\/groups\/beandri\/\" target=\"_blank\" rel=\"noopener noreferrer\">Beandri, nossa inspira\u00e7\u00e3o<\/a>.&quot;\u201d <span> Ela \u00e9 uma grande inspira\u00e7\u00e3o para todos n\u00f3s e nos mant\u00e9m positivos com sua vis\u00e3o de vida.<\/span><\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dCameron\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Cam-with-art-project.jpg\u201d admin_label=\u201dCameron\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Cam era um grande f\u00e3 de esportes. Se n\u00e3o estivesse praticando esportes, ele gostava de assistir seus times esportivos favoritos; o Pittsburgh Penguins e o Steelers. Suas comidas favoritas inclu\u00edam sorvete de chocolate e macarr\u00e3o. Sua cor favorita era azul e ele gostava de matem\u00e1tica e videogames. Cam tinha 16 anos quando faleceu em 2023.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dCarly\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Carly_Heart_2016.jpg\u201d admin_label=\u201dCarly\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Carly-Q, como era carinhosamente chamada por amigos e familiares, era um ador\u00e1vel e impar\u00e1vel pacote de energia! Carly gostava de projetos DIY, fazer slime e cuidar de suas in\u00fameras bonecas. Ela tamb\u00e9m adorava assistir e criar <a href=\"https:\/\/www.youtube.com\/user\/TeamCarlyQ\">V\u00eddeos do YouTube<\/a>.<\/p>\n<p>Em 2012, a Carly Cares, uma organiza\u00e7\u00e3o sem fins lucrativos 501(c)3, foi fundada para apoiar fam\u00edlias e pesquisadores com prog\u00e9ria.\u00a0<\/p>\n<p>Carly amava dan\u00e7ar, escola e, especialmente, matem\u00e1tica. Em julho de 2013, Carly se juntou ao Progeria Drug Trial, vindo para Boston para se inscrever com sua amiga Zoey e, em abril de 2016, elas foram as primeiras a se inscrever no novo teste de 2 medicamentos. \u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=reh9GvH9Jis\" target=\"_blank\" rel=\"noopener noreferrer\">Clique aqui<\/a> para assistir a um pequeno v\u00eddeo dela com Zoey em Boston. Confira a m\u00e3e de Carly-Q em <a href=\"https:\/\/www.facebook.com\/CarlyQsMom\" target=\"_blank\" rel=\"noopener noreferrer\">Facebook<\/a>.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dClaudia\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/claudia-with-frame.jpg\u201d admin_label=\u201dClaudia\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Cl\u00e1udia, de Portugal, tinha 23 anos quando faleceu em novembro de 2021. Sua cor favorita era azul, sua mat\u00e9ria escolar favorita era L\u00ednguas Estrangeiras e sua comida favorita era Batata assada \u201cPunched\u201d com bacalhau salgado (em portugu\u00eas, \u00e9 \u201cBatata \u00e1 murro com Bacalhau\u201d). Ela tamb\u00e9m amava m\u00fasica, dan\u00e7a e sair com amigos. Voc\u00ea pode conferir sua p\u00e1gina no Facebook <a href=\"https:\/\/www.facebook.com\/claudia_amaral98-115697513133971\/\">aqui.<\/a><\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dHayley\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/hayley-blue-MTK.jpg\u201d admin_label=\u201dHayley\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Hayley, uma adolescente da Inglaterra com Prog\u00e9ria que conquistou o cora\u00e7\u00e3o de muitos, faleceu em abril de 2015 aos 17 anos. Hayley ganhou o prestigioso pr\u00eamio <em>Pr\u00eamio Filhos da Coragem<\/em> e apareceu em v\u00e1rios document\u00e1rios e hist\u00f3rias sobre Progeria. Voc\u00ea pode conhecer Hayley lendo seus livros,\u00a0<a href=\"https:\/\/www.amazon.com\/Old-Before-My-Time-Progeria-ebook\/dp\/B0873943LH\/ref=sr_1_1?dchild=1&amp;keywords=old+before+my+time&amp;qid=1596217460&amp;sr=8-1\" target=\"_blank\" rel=\"noopener noreferrer\">Velho Antes do Meu Tempo<\/a>, e\u00a0<a href=\"https:\/\/www.amazon.com\/Young-Heart-likes-teenager-Progeria-ebook\/dp\/B084FXDTH4\/ref=sr_1_1?dchild=1&amp;keywords=young+at+heart+hayley+okines&amp;qid=1596217512&amp;s=digital-text&amp;sr=1-1\" target=\"_blank\" rel=\"noopener noreferrer\">Jovem de cora\u00e7\u00e3o<\/a>, sobre viver com Progeria. Em suas palavras, \u201cminha vida com progeria \u00e9 cheia de felicidade e boas mem\u00f3rias. No fundo, n\u00e3o sou diferente de ningu\u00e9m. Somos todos humanos.\u201d Que inspira\u00e7\u00e3o!\u00a0<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dJomar\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/11\/Jomar-para-site-1.png\u201d admin_label=\u201dJomar\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Jomar era cheio de vida! Ele amava dan\u00e7ar e cantar. Sua m\u00fasica favorita para cantar era \u201cVamos a la Playa\u201d! Jomar amava animais e visitar o zool\u00f3gico e o aqu\u00e1rio. Seus programas favoritos inclu\u00edam Patrulha Canina e Homem-Aranha. Jomar tinha 13 anos quando faleceu em 2023.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dJosiah\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/josiah-on-first-baseMTK.jpg\u201d admin_label=\u201dJosiah\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Josiah, um personagem cujo amor pelo beisebol capturou a aten\u00e7\u00e3o dos f\u00e3s de esportes em todos os lugares, faleceu em 24 de dezembro de 2018 aos 14 anos. Josiah foi destaque em 2010 e 2017 no E:60 da ESPN e inspirou muitos com sua coragem, incluindo seu jogador favorito, Ryan Howard do Philadelphia Phillies. Escolhido pela ABC como um\u00a0<a href=\"https:\/\/abcnews.go.com\/US\/Family\/rare-disease-body-age-rapidly-stop-boy-playing\/story?id=14029162\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/abcnews.go.com\/US\/Family\/rare-disease-body-age-rapidly-stop-boy-playing\/story?id%3D14029162&amp;source=gmail&amp;ust=1547646489488000&amp;usg=AFQjCNGHOV9V6FQb7HKDHNtUe4TjxSjTJw\">\u201cPessoa da Semana\u201d\u00a0<\/a>em 2011, Josiah afetou as pessoas porque, como diz sua m\u00e3e Jennifer, \u201cEle n\u00e3o deixou que sua condi\u00e7\u00e3o o impedisse. Ele foi colocado aqui para tocar a vida das pessoas.\u201d Josiah serviu como\u00a0<a href=\"https:\/\/www.centredaily.com\/sports\/article171690452.html\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.centredaily.com\/sports\/article171690452.html&amp;source=gmail&amp;ust=1547646489488000&amp;usg=AFQjCNFzpw4D1uPJ4i0w-8uTzr9OhNTezw\">Treinador honor\u00e1rio de banco do State College Spikes<\/a>\u00a0(A \u2013 Cardinals) time de beisebol, ganhando o pr\u00eamio Mitauer \u201cGood Guy\u201d de 2015 por sua contribui\u00e7\u00e3o \u00e0 temporada do campeonato e por ser um ser humano generoso, corajoso e apaixonado fora do campo.\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=-ZQ1Yb7QdDo\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.youtube.com\/watch?v%3D-ZQ1Yb7QdDo&amp;source=gmail&amp;ust=1547646489488000&amp;usg=AFQjCNFUQ72_AlP4m56j9ykppl-ujIC3FQ\">Este v\u00eddeo comovente<\/a>\u00a0mostra o qu\u00e3o pr\u00f3ximo o time chegou de seu inspirador treinador durante a temporada de 2014.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dMateo\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/11\/MateoMTK.png\u201d admin_label=\u201dMateo\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.2\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Mateo tem 22 anos e \u00e9 de uma cidade grande na Argentina. Ele come\u00e7ou a vir para Boston para o primeiro teste cl\u00ednico de Progeria, l\u00e1 em 2007! Ele est\u00e1 planejando seguir carreira em engenharia da computa\u00e7\u00e3o e ama tecnologia; ele est\u00e1 sempre no celular, navegando na internet e jogando seu jogo favorito, \u201cFree Fire\u201d. Ele tamb\u00e9m gosta de jogar p\u00f4quer e xadrez.<\/p>\n<p>Ele n\u00e3o gosta de perder os fins de semana com seus primos favoritos, Enzo e Agustin (g\u00eameos), e o grupo de amigos que eles t\u00eam em comum. Mateo \u00e9 muito amado por todos os seus amigos, e por muitas pessoas em sua rede que o apoiam em sua jornada.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dNihal\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Nihal-with-Lamborghini-fev-2015.jpg\u201d admin_label=\u201dNihal\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.24.3\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>Nihal de Mumbai, \u00cdndia, faleceu em 2016 aos 15 anos. Nihal era um grande f\u00e3 de ci\u00eancia que amava pintar. Voc\u00ea pode ver algumas de suas maravilhosas obras de arte em sua p\u00e1gina do Facebook,\u00a0<a href=\"https:\/\/www.facebook.com\/TeamNihal\" target=\"_blank\" rel=\"noopener noreferrer\">EQUIPE NIHAL<\/a>\u00a0e em seu\u00a0<a href=\"https:\/\/twitter.com\/TeamNihal\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a>, ambos ainda ativos por seu pai, Srinivas. Um dos maiores sonhos de Nihal era andar em uma Lamborghini - um sonho que se tornou realidade no in\u00edcio de 2015 na Lamborghini Mumbai, que surpreendeu Nihal em seu 14\u00ba anivers\u00e1rio. Nihal foi uma figura fundamental na campanha\u00a0<a href=\"https:\/\/twitter.com\/hashtag\/Finding60inIndia?src=hash\" target=\"_blank\" rel=\"noopener noreferrer\">#Finding60na\u00cdndia<\/a>, parte da campanha Find the Other 150 da PRF em parceria com a MediaMedic Communications da \u00cdndia. Estima-se que haja 60 crian\u00e7as na \u00cdndia que estamos procurando identificar e conectar para que possam obter a ajuda \u00fanica de que precisam, incluindo a participa\u00e7\u00e3o nos ensaios cl\u00ednicos de medicamentos financiados pela PRF. Assista a isto\u00a0<a href=\"https:\/\/m.youtube.com\/watch?v=JxWo4k5iJpU&amp;feature=youtu.be\" target=\"_blank\" rel=\"noopener noreferrer\">v\u00eddeo com Nihal<\/a>\u00a0para maiores informa\u00e7\u00f5es.<\/p>\n<p>[\/et_pb_team_member][et_pb_team_member nome=\u201dZach\u201d imagem_url=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/09\/Zach-idade-17-EUA.jpg\u201d admin_label=\u201dZach\u201d m\u00f3dulo_class=\u201dprf-person-module\u201d _builder_version=\u201d4.27.0\u2033 custom_margin=\u201d||45px\u201d z_index_tablet=\u201d500\u2033 custom_css_member_position=\u201dcor: #00b2e2;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p style=\"font-weight: 400;\"><span data-markjs=\"true\">Zach<\/span> tinha 17 anos quando faleceu em setembro de 2024. Ele morava em Lexington, Kentucky, amava a cor amarela e era viciado em v\u00eddeos de Minecraft. Ele tamb\u00e9m amava viajar, jogar e ouvir rock cl\u00e1ssico. <span data-markjs=\"true\">Zach<\/span> era excelente em matem\u00e1tica, adorava pizza, p\u00e3o de queijo, cheeseburgers e tiras de frango.<\/p>\n<p style=\"font-weight: 400;\"><span data-markjs=\"true\">Zach<\/span> e seus pais foram convidados (com Carly Q) no The Katie Show em junho de 2014. Katie Couric \u00e9 uma devota apoiadora de crian\u00e7as com Progeria. Katie fez <span data-markjs=\"true\">Zach<\/span>dando a ele o presente mais incr\u00edvel de todos\u2026 ingressos para sua banda de rock favorita, Queen! <span data-markjs=\"true\">Zach<\/span>Os pais de &#039;s organizavam eventos de arrecada\u00e7\u00e3o de fundos para Progeria anualmente (<span data-markjs=\"true\">Zach<\/span> Ataque Ride para Progeria). Sua energia contagiante, seu brilhante senso de humor e seu sorriso viver\u00e3o para sempre.<\/p>\n<p>[\/et_pb_team_member][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 module_class=\u201dfooter\u201d _builder_version=\u201d4.21.0\u2033 background_color=\u201d#29327a\u201d custom_margin=\u201d-2px|||||\u201d custom_padding=\u201d0|0px|0|0px|false|false\u201d z_index_tablet=\u201d500\u2033 border_width_top=\u201d12px\u201d border_color_top=\u201d#00b2e2\u2033 global_module=\u201d133\u2033 locked=\u201doff\u201d global_colors_info=\u201d{}\u201d][et_pb_row column_structure=\u201d1_4,1_4,1_2\u2033 make_equal=\u201don\u201d module_class=\u201d et_pb_row_fullwidth\u201d _builder_version=\u201d4.16\u2033 width=\u201d89%\u201d width_tablet=\u201d80%\u201d width_phone=\u201d\u201d width_last_edited=\u201don|desktop\u201d max_width=\u201d89%\u201d max_width_tablet=\u201d80%\u201d max_width_phone=\u201d\u201d max_width_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 make_fullwidth=\u201don\u201d width_unit=\u201doff\u201d custom_width_percent=\u201d100%\u201d global_colors_info=\u201d{}\u201d][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:\/\/lp.constantcontactpages.com\/sl\/88gWWwz\u201d button_text=\u201dInscreva-se agora\u201d admin_label=\u201dInscreva-se para receber atualiza\u00e7\u00f5es\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.27.4\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d link_option_url=\u201dhttps:\/\/lp.constantcontactpages.com\/sl\/88gWWwz\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201dem|\u00e1rea de trabalho\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201dem|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201dem\u201d button_bg_color__hover=\u201d#8fd2ed\u201d button_border_color__hover_enabled=\u201dem\u201d]<\/p>\n<h2>Inscrever-se<\/h2>\n<h2>para o nosso<\/h2>\n<h2>Atualiza\u00e7\u00f5es!<\/h2>\n<p>[\/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<h2>Juntos, n\u00f3s<\/h2>\n<h2><em>VAI<\/em><\/h2>\n<h2>encontre a cura!<\/h2>\n<p>[\/et_pb_cta][\/et_pb_column][et_pb_column type=&#8221;1_2&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_image src=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2026\/03\/2026-footer-image-copy.png&#8221; title_text=&#8221;2026 footer image copy&#8221; _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;35px||||false|false&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>Muitas fam\u00edlias criaram lindos sites de m\u00eddia social e web dedicados a seus filhos. Venha aqui para conhecer as crian\u00e7as para que suas hist\u00f3rias possam inspirar voc\u00ea a apoiar a PRF.\t\t\t\t\t\t<\/p>","protected":false},"author":1,"featured_media":5856,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<p>[vc_row][vc_column][vc_custom_heading text=\"Meet The Kids\" font_container=\"tag:h1|text_align:center\" google_fonts=\"font_family:Open%20Sans%3A300%2C300italic%2Cregular%2Citalic%2C600%2C600italic%2C700%2C700italic%2C800%2C800italic|font_style:400%20regular%3A400%3Anormal\"][\/vc_column][\/vc_row][vc_row css=\".vc_custom_1477073686504{margin-bottom: 2% !important;}\"][vc_column width=\"1\/2\"][vc_column_text]Many families have created beautiful web and social media sites\u00a0devoted to their children, giving you insight into their daily lives, and their hopes and dreams for a cure. We hope their stories inspire you to support PRF, so those dreams can come true.<\/p><p style=\"font-weight: 400;\">As of March 31, 2019, here is where the 157 known children* with Progeria live:<\/p><p style=\"text-align: center;\"><img class=\"aligncenter size-full wp-image-4632\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/Map-33119.jpg\" alt=\"\" width=\"600\" height=\"352\" \/><\/p><p>[\/vc_column_text][vc_column_text]<strong>*<\/strong> This figure includes 123 children with classic Hutchinson-Gilford Progeria, all of whom have a progerin producing mutation in the LMNA gene, and 34 children in the Progeroid Laminopathy category who have a mutation in the Lamin pathway but do not produce progerin.[\/vc_column_text][\/vc_column][vc_column width=\"1\/2\"][vc_column_text]Get to know the children featured in the HBO Documentary Life According to Sam, and many more from around the world!<br \/>[\/vc_column_text][vc_column_text css=\".vc_custom_1481585776797{margin-top: -1px !important;}\"]<iframe src=\"https:\/\/www.youtube.com\/embed\/aOB3ltOeK9I\" width=\"560\" height=\"335\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe>[\/vc_column_text][vc_column_text]<i>All descriptions were updated July 2015, and most photos were taken in 2013-2015.\u00a0<\/i>First, updates on Sam, Megan, Sammy and Zoey, the children featured in the HBO Documentary Life According to Sam (they were filmed from 2010-2012):[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\" css=\".vc_custom_1480099322375{margin-right: 5% !important;margin-bottom: 60px !important;}\"][vc_column_text css=\".vc_custom_1480513390549{background-color: #ffffff !important;}\"]<\/p><h1 style=\"text-align: center;\">Sam<\/h1><p><a href=\"https:\/\/www.progeriaresearch.org\/sam-berns-102396-0110141.html\"><img class=\"size-full wp-image-347 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Sam_Brochure-2010MTK.jpg\" alt=\"sam_brochure-2010mtk\" width=\"150\" height=\"199\" \/><\/a>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" el_class=\"mtkgray\" css=\".vc_custom_1491161931334{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Sam passed away on January 10, 2014.\u00a0He was 17 years old. The film shows Sam at ages 13 \u2013 15, and we are so grateful that this award-winning documentary will allow the world to know this extraordinary person and the legacy of love, hope and inspiration he gifted to the world. Sam enjoyed many things, including music, comic books, and watching his beloved Boston sports teams play. He attained the highest academic honors, was a percussion section leader in his high school band, and achieved the rank of Eagle Scout in the Boy Scouts of America.<\/p><p>Sam spoke publicly starting at the age of 4 years, shortly after his parents founded The Progeria Research Foundation, including at two\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/tedx-talks\/\" target=\"_blank\" rel=\"noopener noreferrer\">TEDx conferences<\/a>. As of December 2018, his <a href=\"https:\/\/www.progeriaresearch.org\/tedx.html\" target=\"_blank\" rel=\"noopener noreferrer\">October 2013 talk on his philosophy for a happy life<\/a> has been viewed by just shy of 60 million people, and daily tweets about how his talk has inspired people continue. Sam was interviewed on national television and radio programs, including ABC Primetime and NPR, impressing his audiences with his articulate, witty and intelligent demeanor. Through Life According to Sam and his TedX talk, he continues to inspire all of us at PRF, as well as millions around the world.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Meghan Waldron<\/h1><h1 style=\"text-align: center;\"><img class=\"size-full wp-image-4500 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2018\/12\/Meghan-W..png\" alt=\"\" width=\"150\" height=\"150\" \/><\/h1><p>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161942567{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text el_class=\"mtkgray\"]<strong>PRF\u2019s Youth Ambassador<\/strong><\/p><p>Meghan is an accomplished cellist and violinist, high school cross country and track team athlete and published poet and book author. She is a senior in high school and lives with her family in Massachusetts.\u00a0 Meghan now serves as spokesperson for The Progeria Research Foundation, from the perspective of a youth with Progeria.\u00a0In this role Meghan focuses on engaging youth around such events as Hats ON for Progeria, sharing her ideas on how to impact people through social media, and participating in PRF media outreach. Order a copy of her book here: <a href=\"https:\/\/progeria-research-foundation-shop.myshopify.com\/products\/running-on-the-wind-a-book-by-meghan-waldron-prfs-youth-ambassador\">https:\/\/progeria-research-foundation-shop.myshopify.com\/products\/running-on-the-wind-a-book-by-meghan-waldron-prfs-youth-ambassador<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Megan<\/h1><p><img class=\"size-full wp-image-349 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Megan-with-blonde-wig.jpg\" alt=\"megan-with-blonde-wig\" width=\"150\" height=\"150\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161942567{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text el_class=\"mtkgray\"]During the filming of <em>Life According to Sam<\/em> she was 10 years old. Now Megan is eighteen and in high school. Megan loves riding horses and enjoys crafting jewelry for all her friends.<\/p><p>Megan was the first child to take the lonafarnib drug in June 2007 \u2013 it was an historic moment! She is currently enrolled in the <a href=\"https:\/\/www.progeriaresearch.org\/clinical_trial.html#triple\">Lonafarnib Trial<\/a> Extension\/Expansion. When schedules allow she comes to Boston for her trial treatments with her friend Meghan Waldron. The two girls have been together in Boston for most of their trial visits. Megan and her family want you to know that they have complete faith and trust in all of the researchers and doctors and of course PRF: <em>\"But those who hope in the Lord will receive their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.\" Isaiah 40:31<\/em>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Sammy<\/h1><p><img class=\"wp-image-351 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Sammy-Basso-2015.jpg\" width=\"150\" height=\"210\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161949685{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Sammy is 23 years old and is from Italy. \u00a0His favorite activities include acting, reading, painting, and hanging out with his friends. In 2014 Sammy was featured in an Italian National Geographic Series,\u00a0<a href=\"https:\/\/natgeotv.nationalgeographic.it\/it\/il-viaggio-di-sammy\/a-proposito-di\"><em>Il Viaggio Di Sammy<\/em><\/a>, which chronicled his dream trip: travelling on Route 66 in the United States from Chicago to Los Angeles with his parents, Laura and Amerigo, and friend Richard. Sammy\u2019s parents founded the\u00a0<a href=\"https:\/\/www.facebook.com\/groups\/40213564765\/#_=_\"><strong>Associazione Italiana Progeria Sammy Basso<\/strong><\/a>\u00a0to raise awareness, fund research and provide support services to the families. Sammy is a spokesperson at foundation-related meetings, conferences and events. People in Italy can often see Sammy on TV or hear him on the radio on some of the most popular stations, where he also speaks of Progeria and the foundation\u2019s activities.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Adalia<\/h1><p><img class=\"wp-image-354 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Adalia-with-butterflyMTK.jpg\" width=\"150\" height=\"203\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161957194{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Meet Adalia \u2013 she\u2019s from Texas and has a personality the size of Texas, too! She loves to\u00a0sing, dance and play dress up. This 12 year-old sweetheart is widely known for her fun videos and special relationship with her mom, Natalia \u2013 her 14 million Facebook followers are proof of that![\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Brennen<\/h1><p><img class=\"wp-image-356 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Brennen-in-field.jpg\" width=\"150\" height=\"247\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161964129{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Brennen is a ten year old boy from New York. He is very active and loves his dog and his little brother, Owen. Brennen\u2019s family and friends started TEAM BRENNEN to help raise funds and awareness for Progeria, and their small town in upstate NY has rallied around the family. In July 2014,Brennen had his first <a href=\"https:\/\/www.progeriaresearch.org\/clinical_trial.html\">Progeria Clinical Trial<\/a> visit in Boston. His mom posted to Facebook how proud she was for the way Brennen handled all the testing! Keep up with this fun little boy and his great teamon the <a href=\"https:\/\/www.facebook.com\/TeamBrennen\" target=\"_blank\" rel=\"noopener noreferrer\">Team Brennen Facebook page<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Zoey<\/h1><p><img class=\"alignnone size-full wp-image-1589 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/zoey.jpg\" alt=\"\" width=\"139\" height=\"184\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161970346{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]During filming of Life According to Sam, she was about a year old and now she is nine! She loves school and has lots of friends!\u00a0 Zoey loves to draw, write, be silly, be with her best friends, help her mom cook, and she especially loves gymnastics class!<\/p><p>Zoey also adores music, singing, and dancing.\u201d She has 2 older brothers, Aidan and Gavin. They behave like typical siblings \u2013 they play together a lot but sometimes argue for no reason.<\/p><p>In July 2013 Zoey began taking lonafarnib as part of the\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/clinical_trial.html#triple\">Trial Expansion<\/a>, and in April 2016, she and her friend Carly were the first to enroll in the new, \u00a0<a href=\"https:\/\/www.progeriaresearch.org\/clinical_trial.html#fourCT\">2-drug trial<\/a>.\u00a0Her family leads PRF\u2019s <a href=\"https:\/\/www.progeriaresearch.org\/new-jersey-chapter.html\">New Jersey Chapter<\/a>,\u00a0<a href=\"https:\/\/www.teamzoey.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">Team Zoey<\/a>, which is helping PRF to raise the funds needed to pay for Zoey and the other new children entering the trial.\u00a0Follow Zoey on <a href=\"https:\/\/www.facebook.com\/pages\/Team-Zoey\/354642757898903?sk=wall\" target=\"_blank\" rel=\"noopener noreferrer\">Facebook<\/a> and <a href=\"https:\/\/twitter.com\/SupportTeamZoey\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a> too![\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Claudia<\/h1><p><img class=\"wp-image-358 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/claudia-with-frame.jpg\" width=\"150\" height=\"131\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161976628{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Meet Claudia, from Portugal, who is 20 years old. Her favorite color is Blue, favorite school subject is Foreign Languages, and her favorite food is \u201cPunched\u201d baked potatoes with salted cod (In Portuguese it is \u201cBatata \u00e1 murro com Bacalhau\u201d). She also loves music, dancing, and going out with friends.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Beandri<\/h1><p><img class=\"wp-image-355 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Beandri-w-puppy.jpg\" width=\"150\" height=\"193\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161987580{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Beandri is 13 years old, and from South Africa. She loves all girly stuff like a normal girl of her age, especially make-up, dresses and looking pretty. She loves listening to music and singing along to her favorite songs. She is in the school choir and enjoys it tremendously. She loves her Yorkies, and has three older brothers who love her very much. Follow Beandri on facebook \u2013\u00a0 <a href=\"https:\/\/www.facebook.com\/groups\/beandri\/#_=_\" target=\"_blank\" rel=\"noopener noreferrer\">Beandri, our Inspiration.<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Enzo<\/h1><p><img class=\"alignnone size-full wp-image-1591 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/enzo.jpg\" alt=\"\" width=\"150\" height=\"167\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491161995230{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Enzo is an adorable seven year old boy from Australia. He is a whirlwind \u2013 constantly in motion, smiling and always having fun. \u201cHe loves anything with wheels, Mario Kart and riding motorcycles\u201d says his mother, Catherina. \u201cHe plays with his planes, Legos and builds tracks for his trains.\u201d He spends time playing board games and making puzzles.\u00a0 He goes to school full time and loves his teachers and friends, who help Team Enzo with their fundraising. Enzo is one of the youngest children so far to enroll in PRF\u2019s Clinical Trial, coming to Boston in April, 2015 at age 3 for his first treatment. Enzo visited the PRF offices on his trip, and we saw firsthand how active and happy he is and his mother says, \u201cEnzo is a big boy now who is full of life and extremely happy.\u201d\u00a0 See Enzo in motion and meet his family in this <a href=\"https:\/\/m.youtube.com\/watch?v=QEUumIaxM9M\" target=\"_blank\" rel=\"noopener noreferrer\">special video<\/a>. You can also support Team Enzo on their <a href=\"https:\/\/prf.donorpages.com\/TeamEnzoFundraising\/CatherinaLlontop\/\" target=\"_blank\" rel=\"noopener noreferrer\">fundraising page<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Cameron<\/h1><p><img class=\"wp-image-359 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Cam-with-art-project-1.jpg\" width=\"150\" height=\"193\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162037487{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Cam is an active, sports-loving 12-year-old! Cam\u2019s favorites are the color blue, chocolate ice cream, pasta, math, gym, playing sports and video games. His favorite teams are the Pittsburgh Penguins and the Steelers. Cam\u2019s family in the Pittsburgh, Pennsylvania area have created Team Cam, one of our\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/pennpit_chapter.html\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?hl=en&q=https:\/\/www.progeriaresearch.org\/pennpit_chapter.html&source=gmail&ust=1509279750428000&usg=AFQjCNHyDq4fXgEAqpKyotbOIoQYn137yQ\">Pennsylvania<\/a>\u00a0Chapters. They hold events to raise awareness and funds for Progeria research, including Cam\u2019s Course and HatsON. Watch Cam\u2019s video to learn more about him and his family:\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=UF_2sHztfwI\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?hl=en&q=https:\/\/www.youtube.com\/watch?v%3DUF_2sHztfwI&source=gmail&ust=1509279750428000&usg=AFQjCNGkTSjhaNR_InYRrEqRLP3q3TjAXw\">https:\/\/www.youtube.<wbr \/>com\/watch?v=UF_2sHztfwI<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Josiah<\/h1><p><img class=\"wp-image-363 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/josiah-on-first-baseMTK.jpg\" width=\"150\" height=\"132\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162057351{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Josiah, quite the character whose love of baseball had captured the attention of sports fans everywhere, passed away on December 24, 2018 at age 14. Josiah was featured in 2010 and 2017 on\u00a0ESPN\u2019s E:60, and has inspired many with his courage, including his very favorite player, Ryan Howard of the Philadelphia Phillies. Chosen by ABC as a\u00a0<a href=\"https:\/\/abcnews.go.com\/US\/Family\/rare-disease-body-age-rapidly-stop-boy-playing\/story?id=14029162\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/abcnews.go.com\/US\/Family\/rare-disease-body-age-rapidly-stop-boy-playing\/story?id%3D14029162&source=gmail&ust=1547646489488000&usg=AFQjCNGHOV9V6FQb7HKDHNtUe4TjxSjTJw\">\u201cPerson of the Week\u201d\u00a0<\/a>in 2011, Josiah affected people because, as his mom Jennifer says, \u201cHe didn\u2019t let his condition stop him. He was placed here to touch people\u2019s lives.\u201d Josiah served as\u00a0<a href=\"https:\/\/www.centredaily.com\/sports\/article171690452.html\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.centredaily.com\/sports\/article171690452.html&source=gmail&ust=1547646489488000&usg=AFQjCNFzpw4D1uPJ4i0w-8uTzr9OhNTezw\">Honorary Bench Coach for the State College Spikes<\/a>\u00a0(A \u2013 Cardinals) baseball team, earning the 2015 Mitauer \u201cGood Guy\u201d Award for his contribution to their championship season and for being a generous, courageous and passionate human being away from the field.\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=-ZQ1Yb7QdDo\" target=\"_blank\" rel=\"noopener noreferrer\" data-saferedirecturl=\"https:\/\/www.google.com\/url?q=https:\/\/www.youtube.com\/watch?v%3D-ZQ1Yb7QdDo&source=gmail&ust=1547646489488000&usg=AFQjCNFUQ72_AlP4m56j9ykppl-ujIC3FQ\">This heartwarming video<\/a>\u00a0shows how close the team came to their inspirational bench coach during the 2014 season.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text css=\".vc_custom_1498500472166{border-radius: 2px !important;}\"]<\/p><h1 style=\"text-align: center;\">Carly<\/h1><p><img class=\"wp-image-363 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Carly_Heart_2016.jpg\" alt=\"\" width=\"150\" height=\"225\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162067037{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Carly-Q, as she is affectionately called by friends and family, is an adorable, unstoppable bundle of energy! Carly enjoys DIY projects, making slime and caring for her numerous baby dolls. \u00a0She also loves watching and creating youtube videos.\u00a0<a href=\"https:\/\/www.youtube.com\/user\/TeamCarlyQ\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.youtube.com\/user\/TeamCarlyQ<\/a><\/p><p>In 2012,\u00a0Carly Cares, a 501(c)3 non-profit organization was founded\u00a0to support progeria families and researchers. Their signature event is held in September called \u201cCarly\u2019s Party - for the Cure!\u201d- an event that gets bigger each year!<\/p><p>Carly attends school and enjoys math. She loves Curious George and the movie SING!. In July 2013, Carly joined the Progeria Drug Trial, coming to Boston to enroll with her friend Zoey and in April 2016, they were the first to enroll in the new, 2-drug trial. \u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=reh9GvH9Jis\" target=\"_blank\" rel=\"noopener noreferrer\">Click Here<\/a> to watch a short video of her with Zoey in Boston.\u00a0\u00a0Check out Carly Q on <a href=\"https:\/\/www.facebook.com\/teamcarlyq\" target=\"_blank\" rel=\"noopener noreferrer\">facebook<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Little Lindsay<\/h1><p><img class=\"wp-image-365 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Lindsay-lying-on-sideMTK.jpg\" width=\"150\" height=\"147\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162073381{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Lindsay is a bundle of energy and all smiles! Lindsay is an extremely intelligent girl with a wild sense of humor and infectious laugh. She loves school, her friends, and her many hobbies, most of which include a lot of movement! Lindsay was featured with Hayley and Kaylee on the 2010 Barbara Walters 20\/20\u00a0Special <a href=\"https:\/\/abcnews.go.com\/Health\/barbara-walters-special-70-resources-progeria-information\/story?id=14185425\" target=\"_blank\" rel=\"noopener noreferrer\">\u20187 Going on 70\u2019<\/a>. Visit her web site,\u00a0<a href=\"https:\/\/littlelindsay.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">LittleLindsay.com<\/a>, to see lots of pictures and learn about her yearly event, <em>Miles for Miracles<\/em>, organized by PRF\u2019s\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/michigan_chapter.html\" target=\"_blank\" rel=\"noopener noreferrer\">Michigan<\/a>\u00a0chapter run by\u00a0Lindsay's loving parents, supportive family and friends.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Hayley<\/h1><p><img class=\"wp-image-362 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/hayley-blue-MTK.jpg\" width=\"150\" height=\"182\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162088099{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Hayley, a teenager from England with Progeria who captured the hearts of many, passed away in April, 2015 at the age of 17. Hayley won the prestigious Children of Courage Award and appeared in several documentaries and stories about Progeria. Read about Hayley on this <a href=\"https:\/\/www.facebook.com\/pg\/Hayley-Okines-Old-Before-My-Time-301078666575535\/about\/?ref=page_internal\" target=\"_blank\" rel=\"noopener noreferrer\">Facebook page<\/a>\u00a0and in her books,\u00a0<a href=\"https:\/\/www.amazon.co.uk\/Old-Before-My-Time-ebook\/dp\/B008G5LSC0\/ref=cm_cr_pr_product_top\" target=\"_blank\" rel=\"noopener noreferrer\">Old Before My Time<\/a>,\u00a0and <a href=\"https:\/\/www.amazon.com\/Young-Heart-Hayley-teenager-Progeria-ebook\/dp\/B00OOQIY7C\" target=\"_blank\" rel=\"noopener noreferrer\">Young at Heart<\/a>, about living with Progeria. \"My life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human.\u201d[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Nathan & Bennett<\/h1><p><img class=\"alignnone size-full wp-image-1590 aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Nathan-and-Bennet-2011.jpg\" alt=\"\" width=\"150\" height=\"142\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162094233{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Nathan and Bennett are brothers with Progeria who live outside of Philadelphia, PA with their parents, older sister Libby, and dog Ruby. They both have a rare form of Progeria called Mandibuloacral Dysplasia (MAD) and have similar medical conditions to children with classic Progeria. Nathan 13 and Bennett is ten. Nathan is very cautious, responsible and academically minded.\u00a0 He plays violin, trumpet and loves anything science related.\u00a0 Bennett is more \u2018carefree\u2019 and gets away with a lot because of his charming smile and goofy personality.\u00a0 He loves anything sports related and plays football for hours outside, regardless of the weather!\u00a0 Both are obsessed with Star Wars, Minecraft and of course, their electronic devices!\u00a0 Despite the differences in their ages and personalities, these two are best friends!\u00a0 See their beautiful brotherhood\/friendship and meet their family in this\u00a0<a href=\"https:\/\/www.facebook.com\/specialbooksbyspecialkids\/videos\/1140314192737226\/\">heartwarming interview<\/a>\u00a0by\u00a0<em>Special Books for Special Kids<\/em>. Their family and friends created\u00a0<em>\u201cFighting for Their Future\u201d<\/em>,\u00a0the\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/pennsylvania-philadelphia-chapter\/\">Philadelphia, Pennsylvania Chapter for PRF<\/a>\u00a0to help raise awareness and funds for Progeria research. We are very excited and happy to work with them on their many events, including their signature, fun event\u00a0\u201c<em>Make a Splash for Nathan and Bennett<\/em>\u201d.\u00a0 For more information on this dynamic duo please visit their\u00a0<a href=\"https:\/\/www.facebook.com\/pg\/nathanandbennett\/about\/?ref=page_internal\">Facebook Page<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Sweet Kaylee<\/h1><p><img class=\"wp-image-364 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/KayleeCheerMTK.jpg\" width=\"150\" height=\"101\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162100148{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Kaylee is from Ohio and is fifteen years old. Kaylee\u2019s family and friends started PRF\u2019s\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/ohio_chapter.html\">Ohio Chapter\u00a0<\/a>in 2006, and have had tremendous success with its signature event, Kaylee\u2019s Course. More recently, they spend a night each summer at their local ice cream shop, Freeze Daddy\u2019s to raise money for PRF. Kaylee and her brothers enjoy serving ice cream all night, and attendees vie for raffle prizes and check out some vintage cars. Kaylee is quite the local celebrity and a very busy girl, you can also find Kaylee on musical.ly, where she has over 3 million fans! Keep up with Kaylee by joining her\u00a0<a href=\"https:\/\/www.facebook.com\/groups\/111892979356\/\">Facebook Group!<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Zach<\/h1><p><img class=\"wp-image-469 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Zach-with-Katie-yellow-June-2014.jpg\" width=\"150\" height=\"200\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162106591{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Zach is twelve years old and lives in Lexington, Kentucky in the USA (Go Cats!) Zach loves the color yellow and is addicted to Minecraft videos. He loves traveling, being in the Cub Scouts and listening to classic rock and roll music. Zach excels in math and recess at school. He loves pizza, cheese bread, cheeseburgers and chicken fingers. Zach and his parents were guests (with Carly Q) on The Katie Show in June of 2014. Katie Couric is a devoted supporter of children with Progeria. Katie made Zach\u2019s year by giving him the most awesome gift ever\u2026.tickets to his favorite rock band, Queen! Zach\u2019s parents host several fundraisers yearly and formed the Kentucky Chapter of PRF in 2009. \u00a0Zach appears with <a href=\"https:\/\/www.youtube.com\/watch?v=ORgY4zDYswo\">NHRA Champion Erica Enders<\/a>\u00a0and motorcycle champion\u00a0<a href=\"https:\/\/www.youtube.com\/watch?v=azkxOB5WaoQ\">Kyle Wyman<\/a>\u00a0a Public Service Announcements, and his contagious energy and smile will brighten your day \u2013 follow Team Zach Attack\u00a0and the\u00a0<a href=\"https:\/\/www.progeriaresearch.org\/kentucky_chapter.html\">Kentucky Chapter\u2019s\u00a0<\/a>activities.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Michiel & Amber<\/h1><p><img class=\"wp-image-366 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Michiel-and-Amber.jpg\" width=\"150\" height=\"194\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162117038{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Meet Michiel, 20, who loves snowboarding and kart racing, computer games, hanging with his friends, DJ\u2019ing, and \u201cThe Big Bang Theory\".\u00a0 His 13-year-old sister Amber loves to horse around with Michiel, gymnastics, dancing, the color green and and her mobile phone. Read about these very close siblings from Belgium on their <a href=\"https:\/\/www.progeria.be\/?lang=en\">multi-lingual site<\/a>\u00a0created with love by their parents. Learn through the detailed diary about their experiences living with Progeria, and the life of this wonderful boy and girl who bring so much joy to all who know them. You can also stay in touch with them on\u00a0<a href=\"https:\/\/www.facebook.com\/pages\/Ik-ben-michiel\/204907719690404\">Michiel\u2019s Facebook page<\/a>.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=\"1\/4\"][vc_column_text]<\/p><h1 style=\"text-align: center;\">Nihal<\/h1><p><img class=\"wp-image-373 size-full aligncenter\" style=\"border: 2px solid #ddd; border-radius: 8px; position: relative; padding: 1px 1px 1px 1px;\" src=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2016\/10\/Nihal-with-Lamborghini-Feb-2015.jpg\" width=\"150\" height=\"158\" \/>[\/vc_column_text][\/vc_column][vc_column width=\"3\/4\" css=\".vc_custom_1491162123606{margin-top: 90px !important;background-color: #f5f5f5 !important;}\"][vc_column_text]Nihal from Mumbai, India, passed away in 2016 at the age of 15. Nihal was a\u00a0big science fan who loved to paint. You can see some of his wonderful artwork on his Facebook page, <a href=\"https:\/\/www.facebook.com\/TeamNihal\" target=\"_blank\" rel=\"noopener noreferrer\">TEAM NIHAL<\/a> and on his <a href=\"https:\/\/twitter.com\/TeamNihal\" target=\"_blank\" rel=\"noopener noreferrer\">Twitter<\/a>, both still active by his Dad, Srinivas. One of Nihal\u2019s greatest dreams was to ride in a Lamborghini-a dream that came true early in 2015 at Lamborghini Mumbai, who surprised Nihal for his 14th birthday. Nihal was a pivotal figure in the campaign <a href=\"https:\/\/twitter.com\/hashtag\/Finding60inIndia?src=hash\" target=\"_blank\" rel=\"noopener noreferrer\">#Finding60inIndia<\/a>, part of PRF\u2019s Find the Other 150 Campaign in partnership with India\u2019s MediaMedic Communications. \u00a0It is estimated there are 60 children in India who we are looking to identify and connect with so that they can get the unique help they need, including participation in the PRF-funded clinical drug trials. Watch this <a href=\"https:\/\/m.youtube.com\/watch?v=JxWo4k5iJpU&feature=youtu.be\" target=\"_blank\" rel=\"noopener noreferrer\">video featuring Nihal<\/a> for more information.[\/vc_column_text][\/vc_column][\/vc_row]<\/p>","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-4746","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Meet the Kids | The Progeria Research Foundation<\/title>\n<meta name=\"description\" content=\"Many families have created beautiful web and social media sites devoted to their children. 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