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A Ara Parseghian Medical Research Foundation: Encontrando uma cura para a doença de Niemann-Pick tipo C
A Ara Parseghian Medical Research Foundation é uma organização sem fins lucrativos que se dedica a encontrar uma cura para a devastadora doença de Niemann-Pick Tipo C. Essa doença genética rara e fatal afeta crianças e adultos jovens, causando deterioração neurológica progressiva, convulsões e, por fim, a morte. A fundação foi criada em 1994 pelo lendário técnico de futebol do Notre Dame, Ara Parseghian, depois que três de seus netos foram diagnosticados com a doença.
Desde a sua criação, a fundação tem o compromisso de financiar pesquisas sobre as causas e possíveis tratamentos para a doença de Niemann-Pick Tipo C. Por meio de parcerias com as principais instituições médicas e pesquisadores de todo o mundo, eles fizeram progressos significativos na compreensão desse distúrbio complexo.
Uma das principais áreas de foco da fundação tem sido a identificação de possíveis terapias medicamentosas que possam retardar ou interromper a progressão da doença de Niemann-Pick Tipo C. Eles apoiaram numerosos ensaios clínicos destinados a testar novos medicamentos em pacientes com essa condição, incluindo vários compostos promissores que mostraram sinais precoces de eficácia.
Além de seu trabalho no desenvolvimento de medicamentos, a fundação também apóia pesquisas básicas para entender como a doença de Niemann-Pick tipo C afeta células e tecidos do corpo. Isso inclui estudos sobre como o metabolismo do colesterol é interrompido em indivíduos afetados, bem como investigações sobre outras vias celulares que podem estar envolvidas na patogênese da doença.
Outro aspecto importante de seu trabalho é aumentar a conscientização sobre a doença de Niemann-Pick tipo C entre profissionais de saúde, formuladores de políticas e membros do público. Ao educar outras pessoas sobre esta condição rara e seus efeitos devastadores nas famílias afetadas por ela, eles esperam aumentar o apoio aos esforços de pesquisa destinados a encontrar uma cura.
No geral, a missão da Ara Parseghian Medical Research Foundation é clara: encontrar uma cura para a doença de Niemann-Pick tipo C por meio de iniciativas de pesquisa inovadoras que reúnem especialistas de várias disciplinas. Com apoio contínuo de doadores em todo o mundo, eles estão confiantes de que podem fazer uma diferença real na vida das pessoas afetadas por essa condição devastadora.
parseghian.org
