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A Cure CLCN4 \u00e9 liderada por uma equipe dedicada de pais, cientistas e profissionais que trabalham juntos para promover a pesquisa e apoiar fam\u00edlias que vivem com doen\u00e7as relacionadas ao CLCN4.<\/p>\n
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Nossos curadores cuidam da governan\u00e7a e da dire\u00e7\u00e3o estrat\u00e9gica, enquanto nossos consultores cient\u00edficos trazem conhecimentos de ponta em gen\u00e9tica, neuroci\u00eancia e pesquisa de doen\u00e7as raras. As atividades da institui\u00e7\u00e3o de caridade s\u00e3o coordenadas pelo nosso Chefe de Pesquisa e Gerente de Caridade, que supervisiona o programa cient\u00edfico e as opera\u00e7\u00f5es di\u00e1rias, garantindo que nossa miss\u00e3o se traduza em progresso real para a comunidade CLCN4. <\/p>\n
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Peter \u00e9 um co-fundador da Caridade registada no Reino Unido, Cure CLCN4. \u00c9 pai de tr\u00eas filhos fant\u00e1sticos, o mais novo dos quais \u00e9 afectado pelo CLCN4. \u00c9 fundador de uma empresa e membro do conselho de administra\u00e7\u00e3o que trabalha no sector da biotecnologia. \u00c9 tamb\u00e9m um investidor de sementes e mentor de fundadores de empresas de sa\u00fade e tecnologia em fase inicial. <\/p>\n
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Gina \u00e9 co-fundadora da Cure CLCN4, uma cl\u00ednica m\u00e9dica e m\u00e3e de duas raparigas, sendo a mais nova afectada pela CLCN4. Estudou medicina no King’s College London e formou-se em hospitais em Londres e Bath, subespecializando-se em Reumatologia. Realizou forma\u00e7\u00e3o em investiga\u00e7\u00e3o cl\u00ednica na Queen Mary University London. <\/p>\n
[\/et_pb_toggle][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/11\/Alan_New_Headshot.png” title_text=”Alan_New_Headshot” align=”center” _builder_version=”4.27.4″ _module_preset=”default” max_width=”90%” global_colors_info=”{}”][\/et_pb_image][et_pb_toggle title=”DR. ALAN WISE” closed_toggle_background_color=”#FFFFFF” _builder_version=”4.27.4″ _module_preset=”default” title_text_color=”#0f7162″ title_level=”h4″ title_font=”|700|||||||” title_text_align=”center” title_font_size=”20px” global_colors_info=”{}”]<\/p>\n
Alan \u00e9 administrador na Cure CLCN4. \u00c9 um empres\u00e1rio biotecnol\u00f3gico experiente e bem sucedido com um conhecimento profundo da descoberta de drogas. Actualmente \u00e9 CEO da Duke Street Bio. As fun\u00e7\u00f5es anteriores incluem o cargo de CEO da bem sucedida biotecnologia, IOmet Pharma, que foi adquirida pela MSD em 2016, e fun\u00e7\u00f5es de descoberta de medicamentos s\u00e9nior na grande Pharma (GlaxoSmithKline). Alan obteve a sua licenciatura e doutoramento em Bioqu\u00edmica na Universidade de Leeds e realizou investiga\u00e7\u00e3o de p\u00f3s-doutoramento na Universidade de Glasgow. Passou ent\u00e3o 12 anos na GSK e esteve envolvido em v\u00e1rias \u00e1reas de descoberta de medicamentos pr\u00e9-cl\u00ednicos antes de se mudar para o sector da Biotecnologia. No seu tempo livre, Alan gosta de correr, andar de montanhismo e de bicicleta com a sua fam\u00edlia. <\/p>\n
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Alexis \u00e9 administrador da Cure CLCN4. \u00c9 tamb\u00e9m advogado corporativo no escrit\u00f3rio global Bryan Cave Leighton Paisner e \u00e9 especializado em transac\u00e7\u00f5es de private equity no sector da sa\u00fade. Tem um forte interesse na ci\u00eancia e medicina e procura frequentemente combinar isto com o seu papel como advogado. A Alexis tem actuado em v\u00e1rias transac\u00e7\u00f5es de cuidados de sa\u00fade, incluindo a representa\u00e7\u00e3o de empresas em fase de arranque e em fase inicial que operam em sub-sectores que incluem a tecnologia m\u00e9dica e farmac\u00eautica. Alexis tem um mestrado em direito pelo Jesus College, Cambridge. Alexis \u00e9 apaixonado por desporto, incluindo corrida, t\u00e9nis e boxe, mas o seu amor por participar no desporto foi lentamente ultrapassado pelo seu amor por ver os seus filhos a praticar desporto! <\/p>\n
[\/et_pb_toggle][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/11\/Larry_New_Headshot.png” title_text=”Larry_New_Headshot” align=”center” _builder_version=”4.27.4″ _module_preset=”default” max_width=”90%” global_colors_info=”{}”][\/et_pb_image][et_pb_toggle title=”LARRY LOUISON” closed_toggle_background_color=”#FFFFFF” _builder_version=”4.27.4″ _module_preset=”default” title_text_color=”#0f7162″ title_level=”h4″ title_font=”|700|||||||” title_text_align=”center” title_font_size=”20px” global_colors_info=”{}”]<\/p>\n
Larry \u00e9 administrador da Cure CLCN4 e s\u00f3cio do TC Group, sediado no escrit\u00f3rio de Londres. \u00c9 um membro da Associa\u00e7\u00e3o de T\u00e9cnicos Oficiais de Contas com mais de 20 anos de experi\u00eancia na pr\u00e1tica geral. Sendo muito apaixonado pelos objectivos de CureCLCN4, Larry est\u00e1 empenhado em utilizar as suas compet\u00eancias e experi\u00eancia para construir uma forte infra-estrutura financeira dentro da empresa. <\/p>\n
[\/et_pb_toggle][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2025\/11\/Paul_New_Headshot.png” title_text=”Paul_New_Headshot” align=”center” _builder_version=”4.27.4″ _module_preset=”default” max_width=”90%” global_colors_info=”{}”][\/et_pb_image][et_pb_toggle title=”PAUL MCGUINNESS” closed_toggle_background_color=”#FFFFFF” _builder_version=”4.27.4″ _module_preset=”default” title_text_color=”#0f7162″ title_level=”h4″ title_font=”|700|||||||” title_text_align=”center” title_font_size=”20px” global_colors_info=”{}”]<\/p>\n
Paul iniciou a sua carreira como consultor tecnol\u00f3gico na Apple no lan\u00e7amento do iPhone e App Store original. Fundou e esteve envolvido em v\u00e1rias empresas tecnol\u00f3gicas em arranque e \u00e9 apaixonado pelo poder da tecnologia para melhorar a forma como interagimos, trabalhamos e vivemos. Paul quer usar sua experi\u00eancia com plataformas tecnol\u00f3gicas para aumentar a conscientiza\u00e7\u00e3o sobre a CLCN4 e causar um impacto positivo a longo prazo para as fam\u00edlias que t\u00eam um ente querido com essa condi\u00e7\u00e3o.<\/p>\n
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Rebeca \u00e9 a chefe de pesquisa e gerente de caridade da Cure CLCN4. O seu papel \u00e9 ajudar a promover os objectivos do Cure CLCN4. Trabalha com o Conselho de Curadores para desenvolver, moldar e implementar a estrat\u00e9gia de investiga\u00e7\u00e3o, pol\u00edtica e governa\u00e7\u00e3o da Cure CLCN4. Rebeca concluiu com sucesso o doutoramento em Gen\u00e9tica na Universidade de Cambridge. O seu projecto centrou-se na biologia celular e gen\u00e9tica dos organ\u00f3ides pancre\u00e1ticos do rato. Tem tamb\u00e9m um Mestrado pela Research e uma licenciatura em Biologia Celular Molecular pela Universidade de York. No seu tempo livre, Rebeca gosta de ler, ver filmes e fazer exerc\u00edcio.<\/p>\n
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A Dra. Palmer (PhD, MBBS, FRACP, BA (Hons I) Oxon) \u00e9 uma cientista cl\u00ednica na Rede de Hospitais Infantis de Sydney e na Universidade de Nova Gales do Sul, em Sydney, Austr\u00e1lia. Ela tem muita experi\u00eancia na \u00e1rea de gen\u00e9tica cl\u00ednica e de pesquisa, liderando equipes multidisciplinares e estabelecendo colabora\u00e7\u00f5es internacionais para descobrir novas condi\u00e7\u00f5es gen\u00e9ticas. Ela foi a primeira autora de uma publica\u00e7\u00e3o que descreve o impacto das altera\u00e7\u00f5es do gene CLCN4 em 52 indiv\u00edduos, modera as p\u00e1ginas do gene CLCN4 na Human Disease Gene Webseries junto com a professora Vera Kalscheuer e lidera os aspectos cl\u00ednicos de um estudo internacional para entender melhor o espectro gen\u00e9tico e cl\u00ednico da condi\u00e7\u00e3o relacionada ao CLCN4. <\/p>\n
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A Dra. Vera Kalscheuer (PhD) \u00e9 cientista no Instituto Max Planck de Gen\u00e9tica Molecular em Berlim, Alemanha. Obteve a sua licenciatura e doutoramento em Bioqu\u00edmica na Universidade Livre em Berlim, Alemanha. Conduziu investiga\u00e7\u00e3o de p\u00f3s-doutoramento no Departamento de Gen\u00e9tica Humana em Nijmegen, Pa\u00edses Baixos. O trabalho da Vera \u00e9 focado em identificar novos genes ligados a defici\u00eancias neurodesenvolvimentais e na caracteriza\u00e7\u00e3o molecular e funcional de genes e prote\u00ednas selecionados para entender melhor os mecanismos moleculares e patol\u00f3gicos subjacentes. Com a sua investiga\u00e7\u00e3o, descobriu e contribuiu para a identifica\u00e7\u00e3o de numerosos genes ligados a v\u00e1rias formas de defici\u00eancias de desenvolvimento neurol\u00f3gico, incluindo o CLCN4, estabelecendo assim um diagn\u00f3stico molecular para os pacientes e as suas fam\u00edlias. A fim de melhor compreender as perturba\u00e7\u00f5es relacionadas com o CLCN4, juntamente com a Dra. Emma Palmer e outros colaboradores, realizou um grande estudo sobre o impacto gen\u00e9tico, cl\u00ednico e funcional das variantes CLCN4 recentemente identificadas. Vera e Emma est\u00e3o actualmente a estudar um grupo ainda maior de doentes com defeitos gen\u00e9ticos relacionados com o CLCN4.<\/p>\n
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O Dr. Gary Wilson tem mais de 14 anos de experi\u00eancia no financiamento da investiga\u00e7\u00e3o cient\u00edfica e no desenvolvimento de programas e estrat\u00e9gias de bolsas. Actualmente \u00e9 Chefe do Portf\u00f3lio Cient\u00edfico na Gatsby Charitable Foundation onde o seu papel envolve o desenvolvimento, implementa\u00e7\u00e3o e monitoriza\u00e7\u00e3o do financiamento da investiga\u00e7\u00e3o e actividades estrat\u00e9gicas tanto na carteira de neuroci\u00eancia como na carteira de ci\u00eancia das plantas da Gatsby. Antes de se juntar \u00e0 Gatsby, Gary foi Consultor de Carteira na sec\u00e7\u00e3o de financiamento de Neuroci\u00eancia e Sa\u00fade Mental do Wellcome Trust. Tem um BA\/MA em Ci\u00eancias Naturais pela Universidade de Cambridge e um doutoramento em neurofarmacologia pelo University College London. <\/p>\n
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