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Coraje para brillar: Empoderar a las personas con extrofia vesical
Courage to Shine es una organización sin fines de lucro que tiene como objetivo empoderar a las personas con extrofia vesical, una rara condición congénita que afecta el sistema urinario. Fundada en 2009 por Thomas Exler, Courage to Shine ha brindado apoyo y recursos a pacientes y familias afectados por esta afección.
La misión de la organización es crear conciencia sobre la extrofia vesical y brindar educación, defensa y apoyo a quienes viven con ella. Courage to Shine cree que cada individuo merece la oportunidad de vivir su vida sin limitaciones o barreras causadas por su condición médica.
Una de las formas en que Courage to Shine logra su misión es a través de la organización de eventos como la Conferencia Internacional de Extrofia y el Campamento Anual de Verano del Capítulo 12 de A-BE-C Great Lakes. Estos eventos reúnen a pacientes, familias, profesionales de la salud e investigadores de todo el mundo que comparten un interés común en la extrofia vesical.
La Conferencia Internacional de Extrofia es un evento anual que brinda a los asistentes la oportunidad de conocer nuevos hallazgos de investigación relacionados con la extrofia vesical. La conferencia también presenta talleres sobre temas como estrategias de autocuidado para pacientes que viven con esta afección.
El Campamento Anual de Verano 12 del Capítulo A-BE-C Great Lakes es otro evento organizado por Courage to Shine. Este campamento brinda una oportunidad para que los niños afectados por la extrofia vesical y sus familias se conecten con otras personas que comparten experiencias similares. El campamento incluye actividades como natación, senderismo, artes y manualidades, juegos y deportes.
Courage To Shine también reconoce a las personas que han demostrado un coraje excepcional para superar los desafíos asociados con la extrofia vesical a través de su programa Lisha Martinez & Adam Young Award. Briten Douglas recibió este prestigioso premio en 2019 debido a sus destacados logros a pesar de sus desafíos médicos.
Briten Douglas nació el 27 de octubre de 1986 con extrofia vesical, pero no dejó que su condición lo definiera. Se ha convertido en una inspiración para muchas personas en todo el mundo al compartir su historia y defender a las personas con extrofia vesical. Briten Douglas es una verdadera encarnación de la misión de Courage to Shine.
Courage to Shine también proporciona recursos como materiales educativos, grupos de apoyo y foros en línea para pacientes y familias afectadas por la extrofia vesical. Estos recursos ayudan a las personas que viven con esta afección a conectarse con otras personas que comparten experiencias similares y aprenden sobre nuevas opciones de tratamiento.
En conclusión, Courage to Shine es una organización sin fines de lucro que se dedica a empoderar a las personas con extrofia vesical. A través de sus eventos, programa de premios y recursos, Courage To Shine ha podido crear conciencia sobre esta rara condición médica mientras brinda apoyo a las personas afectadas por ella. Si usted o alguien que conoce vive con extrofia vesical, considere comunicarse con Courage To Shine para obtener apoyo y orientación sobre la mejor manera de manejar la afección.
courage-to-shine.org
