Sarah Walters ha cumplido 49 años con Fq

La gran Sarah Walters, de Reino Unido, ha cumplido 49 años, leer su web es toda una alegría para todos los afectados de Fq. Esta mujer es a sus 49 años(sin trasplantar) un ejemplo a seguir en Fq.
Es médico, motera, heavy metalera y hace cantidad de ejercicio todos los días, es instructora de sky y de varios deportes. Os recomiendo su web.


http://www.docsquid.com/aboutme.htm

Últimos Avances en Fq De Vertex Farmaceutics y su Vx-770

A new drug therapy may represent a tremendous step forward in the treatment of some 70,000 cystic fibrosis (CF) patients worldwide, Dr David Sheppard from the University of Bristol told an audience at the BA Festival of Science in Liverpool today [9 September]. Speaking at the conference, Dr Sheppard said: 'The early results with VX-770 suggest that drug therapies which target defects at the root of the disease have the potential to improve greatly the quality of life of CF patients.' At the moment there is no cure for CF - a common single-gene disorder in the UK. The disease, which affects about 8,000 people in the UK and 70,000 people worldwide, is due to a defective gene that causes ducts and tubes in the body to become blocked by thick, sticky mucus. This mucus affects the lungs, pancreas, the intestines, the liver and the reproductive organs. One of the most recognisable symptoms of CF is 'salty sweat', caused by the failure of the sweat ducts to reabsorb salt. Existing treatments only alleviate symptoms, for example, physiotherapy to clear the air passages, antibiotics for lung infections and enzymes to aid the digestion of food. The defective gene disables or destroys a protein known as CFTR. To date around 1,500 genetic defects have been found in this protein. In general, genetic defects cause harm in two ways - some stop the protein from travelling to its correct destination in cells, whereas others prevent the protein from working properly. Dr Sheppard's research group, supported by the Cystic Fibrosis Trust, investigates how new drugs restore function to defective CFTR proteins and EuroCareCF, of which Dr Sheppard is the coordinator, works to promote CF therapy development in Europe. The new drug therapy (VX-770) was developed by Vertex Pharmaceuticals and will tackle the 'functional' defect. It has been tested on CF patients in the US who carry a genetic defect known as G551D. European trials are expected in the future. Early results are very encouraging. Patients who received 150mg twice a day saw the concentration of salt in their sweat decrease by almost 50 per cent and lung function improve by 10 per cent. The Cystic Fibrosis Foundation funded the discovery and early development work of VX-770 in collaboration with Vertex Pharmaceuticals. To date the Foundation has invested $79 million in the project. Results of the trials can be found here. Dr Sheppard's research group and other academic groups and companies are also working to develop new drugs that tackle defects at the root of CF. Current life expectancy for CF patients is between 30 and 40 years of age in Western Europe and the US but is considerably lower in other parts of the world. One in 25 people in the UK is a carrier of a defective CF gene, making CF one of the most common life-shortening, childhood-onset, inherited diseases. http://www.bristol.ac.uk/

El día 23 de Julio fuimos recibidos por el Presidente de la Xunta de Galicia

El pasado día 23 de Julio, nuestra Presidenta Angeles Campos fue recibida por el Presidente de La Xunta Emilio Pérez Touriño.
Todos confiamos en que todas estas reuniones con altos dirigentes de la escala Pública tengan pronto sus resultados positivos plasmados en avances, ayudas, subvenciones para nuestro colectivo.
Muchas Gracias

JORNADAS SOBRE NUTRICIÓN A LA VUELTA DEL VERANO

Este año las jornadas en Otoño serán sobre Nutrición

Ya os iremos dejando mas información en la web, pero os anticipamos que este años las jornadas para Octubre serán sobre Nutrición alimentaria en la Fq.
Os esperamos a todos.

Suelta de Globos en La Coruña

El día señalado para la suelta de globos en La Coruña este año fue el día 27 de Abril . Un día después del partido de fútbol disputado entre el Deportivo y el Barcelona.
Al acto tuvimos el honor de contar con el jugador del deportivo Juan Carlos Valerón, el cual, nos mostró un año mas su amabilidad y sus buenos gestos de cariño hacia los niños con fq.
¡ GRACIAS JUAN CARLOS !

Imágenes del partido entre el Depor y el Barcelona en apoyo a la Fibrosis Quística ( 26 De Abril 2008 )

Aquí os dejamos unas cuantas imágenes del partido entre el depor y el barcelona en apoyo de
la Fibrosis Quística, celbrado el pasado día 26 de Abril del 2008 en el Estadio de Riazor.