Cabecera Articulo-01

Un año del documental

Mañana a las 12 de la mañana hará un año del estreno en la red de Raras pero no invisibles. Ha sido un año apasionante para el equipo. Durante este año hemos tenido la oportunidad de asistir a proyecciones del documental en distintos actos y poder compartir allí con los asistentes nuestras impresiones y experiencias en la grabación del documental.  Nuestra andadura comenzó en Murcia en el mes de febrero, donde gracias a la Asociación De Divulgación Científica de Murcia (ADC) seIPhone_3_hasta_julio2014 408 emitió el documental en la biblioteca regional de Murcia, y donde tuvimos la oportunidad de compartir tras la proyección una mesa redonda con el presidente de FEDER, Juan Carrión.   Otra de la actividades que litoralhemos llevado a cabo es presentar el documental en diferentes institutos de secundaria. Uno de ellos fue el IES Litoral que proyectó el documental dentro de sus actividades de la Semana de la Salud. Nuestro afán de dar la mayor visibilidad posible al documental nos IPhone_3_hasta_julio2014 449llevo también a dar charlas sobre el mismo en distintos sitios. Uno de ellos fue dentro de la VI Jornada Investigar es Avanzar que organizó CIBERER en Valencia con motivo de la celebración del día mundial de las enfermedades raras. El mes de mayo fue un mes muy emocionante para nosotros porque  nos comunicaron que el documental había recibido del Premio ASEBIO de comunicación y divulgación de la biotecnología en la categoría de televisión. Este premio supuso un reconocimiento muy importante al trabajo que con tanto cariño habíamos realizado. En mayo también comenzó la andadura de la plataforma “Raras pero no la foto 1 (3)invisibles” dejando de ser sólo una página donde se contaba como surgió y se realizó el documental para convertirse en lo que es hoy, y que presentamos en Ciencia en Redes en Madrid. Unos meses después, en Junio, tuvimos la oportunidad de volver a la foto 2 (3) Valencia. En esta ocasión asistimos a la Jornada por la Visibilidad de las Enfermedades Raras  “tan diferentes y tan iguales” En esta jornada, tras la emisión del documental tuvimos el honor de entregar los premios de la “I Edición del concurso Genagen de Relato Corto sobre Enfermedades Raras” En Julio fue la entrega del Premio ASEBIO en Madrid. IMG_1496 IMG_1521   El documental también se emitió en Medialab Prado en Madrid dentro de las actividades de la semana de la Biotecnología que se celebró a principios de octubre. la foto 5Como ya os contamos hace unas semanas en noviembre el documental nos llevó a Sevilla. Pero aunque ha sido hace muy poco ahí no ha terminado la andadura del primer año del documental. la foto 1 (4)El pasado viernes, 28 de noviembre,  un año después de que se realizará el pre-estreno en Málaga, gracias a FEDER, a la Fundación Síndrome de Dravet y a Microsoft se proyectó el documental en las instalaciones de Microsoft y tras este hubo una mesa redonda muy interesante integrada por Mamen Almazán (Psicóloga de FEDER), Carlos M. Guevara (Director del documental), Lluis Montoliú (Investigador del CNB), Juan Ramón Rodríguez (Vicepresidente Asociación Phelam McDermid) , Julián Isla (presidente de la Fundación Síndrome de Dravet.), Ana Mingorance (Directora de Investigación de la Fundación Síndrome de Dravet). la foto 3 (1)     Estas son algunas de las fotos del pre-estreno que se realizó en Málaga el 29 de noviembre de 2013. 1798911_376198322523424_1827179737_o
10001213_376198849190038_24840913_o   Ha sido un año muy intenso en el que hemos intentado seguir aumentado la visibilidad de las enfermedades poco frecuentes, y confiamos en seguir haciéndolo aun mejor el próximo año, pero eso no sería posible sin vuestra inestimable ayuda y compañía.

Con todo nuestro cariño.

El equipo de “Raras Pero No Invisibles”

648 pensamientos sobre “Un año del documental”

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    Desde su nacimiento, prematura, de 6 meses y medio de gestación, 800 gr. de peso y después de pasar 3 meses en incubadora en el Hospital de San Juan de Dios, Barcelona, ciudad en la que vivimos, Cristina ha sido una niña con un desarrollo muy deficitario; escoliosis dorsal y lumbar de 35 grados, laxitud exagerada en sus articulaciones, luxaciones varias de su hombro, en fin, dentro de su “vida normal” había una anormalidad en ellla que no la ha dejado desarrollar como cualquier otra niña pero nadie, ningún medico que la trató sospechó que pudiese tener este síndrome.
    El 23 de febrero de 2015, Cristina ingresó en el Hospital General de Granollers, ciudad donde vivimos actualmente por un aneurisma de esplénica, con pérdida de bazo y cola del páncreas y tras una intervención dificilísima y unos excelentes cirujanos que la intervinieron, mi hija superó la situación y hoy día, un año después, ha tenido otros aneurismas pero han sido controlados e intervenidos a tiempo.
    Vivimos con la sensación de llevar una espada de Damocles sobre su cabeza, a la vez que damos gracias a Dios todos los días porque sigue con nosotros, ahora sabemos lo que tiene y podemos controlar la situación; no obstante, también sabemos que no hay medicación para su caso ya que son muy pocas las personas que lo padecen y nadie se ha interesado en estudiarlo para llevar un poco de esperanza a este tipo de enfermos.
    Ahí va el comentario de una madre que sufre por su hija pero que a la vez está enormemente agradecida porque Cristina sigue estando con nosotros y aunque con todos los cuidados que precisa, sigue llevando una vida “normal”.

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