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La Fundación de Investigación Médica Ara Parseghian: encontrar una cura para la enfermedad de Niemann-Pick tipo C
La Fundación de Investigación Médica Ara Parseghian es una organización sin fines de lucro que se dedica a encontrar una cura para la devastadora enfermedad de Niemann-Pick Tipo C. Este trastorno genético poco común y mortal afecta a niños y adultos jóvenes y provoca un deterioro neurológico progresivo, convulsiones y, en última instancia, la muerte. La fundación fue establecida en 1994 por el legendario entrenador de fútbol de Notre Dame, Ara Parseghian, después de que tres de sus nietos fueran diagnosticados con la enfermedad.
Desde sus inicios, la fundación se ha comprometido a financiar la investigación de las causas y los posibles tratamientos para la enfermedad de Niemann-Pick tipo C. A través de asociaciones con instituciones médicas e investigadores líderes en todo el mundo, han logrado un progreso significativo hacia la comprensión de este complejo trastorno.
Una de las áreas clave de enfoque de la fundación ha sido identificar posibles terapias farmacológicas que podrían retrasar o detener la progresión de la enfermedad de Niemann-Pick tipo C. Han apoyado numerosos ensayos clínicos destinados a probar nuevos medicamentos en pacientes con esta afección, incluidos varios compuestos prometedores que han mostrado signos tempranos de eficacia.
Además de su trabajo en el desarrollo de fármacos, la fundación también apoya la investigación básica para comprender cómo la enfermedad de Niemann-Pick tipo C afecta las células y los tejidos del cuerpo. Esto incluye estudios sobre cómo se interrumpe el metabolismo del colesterol en los individuos afectados, así como investigaciones sobre otras vías celulares que pueden estar involucradas en la patogénesis de la enfermedad.
Otro aspecto importante de su trabajo es crear conciencia sobre la enfermedad de Niemann-Pick tipo C entre los profesionales de la salud, los legisladores y el público. Al educar a otros sobre esta rara condición y sus efectos devastadores en las familias afectadas por ella, esperan aumentar el apoyo a los esfuerzos de investigación destinados a encontrar una cura.
En general, la misión de la Fundación de Investigación Médica Ara Parseghian es clara: encontrar una cura para la enfermedad de Niemann-Pick Tipo C a través de iniciativas de investigación innovadoras que reúnan a expertos de todas las disciplinas. Con el apoyo continuo de donantes de todo el mundo, confían en que pueden marcar una diferencia real en las vidas de las personas afectadas por esta devastadora afección.
parseghian.org
