Good news for Cystic Fibrosis Trust

PUBLISHED: 11:36 01 December 2008 | UPDATED: 14:48 20 April 2010

LIZ Brown, of the charity's Honiton branch, explains how your support has raised £4,000.

This year, we have had tremendous support for our stalls in Lace Walk, Honiton, and through donations. Thanks to this support, we collected £1,500 from the stalls. We also held two events at Sidbury Primary School and made £148. Two of my grand-daughter's friends asked for money to go to CF instead of having presents for their birthdays. They raised an amazing £245.10. Audrey Williams, our regional fund manager, came and received the cheque on behalf of the trust. We have also had donations and gifts. Anne and John Reece, who live in Sidmouth, had a child in the 1970s who had cystic fibrosis and sadly only survived a matter of weeks. They have always been very active in their support of the CF Trust. Unfortunately, John died suddenly last November. Anne decided he would want the collection from the funeral to go to the CF Trust - to date our branch has received £1,791.50. John was obviously loved and respected by many. Anne is a member of our branch and helps with fundraising events. The CF Trust funds medical and scientific research aimed towards understanding, treating and curing cystic fibrosis. It also aims to ensure that people with CF receive the best possible care and support in all aspects of their lives. Since they identified and isolated the CF gene, it has meant that scientists could find ways of correcting the basic CF genetic defect rather than just treating symptoms of the condition. The best way to do this is through gene therapy - replacing faulty genes with normal ones. As lung damage is the major cause of illness and death in CF, the first attempts at gene therapy are focusing on delivering genes to the lungs. Gene therapy is still in its infancy, and there are many problems to overcome. The CF Trust has brought together the UK's leading CF geneticists to form the UK CF Gene Therapy Consortium. The scientists are based in Edinburgh, London and Oxford. They are now carrying out trials with a leading product comprising the healthy (non-CF) DNA, a carrier to get the gene to the lungs and a promoter to tell the body to turn it on. Gene therapy aims to replace the faulty gene in the lung cells with a healthy copy, thus preventing the long term damage to the tissue of the lungs, which ultimately claims so many young lives. The pilot study for clinical trials of gene therapy started this year, but it costs over £3.5 million each year to fund this work. Because of this the possibility of an effective treatment has now become tantalisingly close, so the money we have raised this year will make a very real contribution towards a better life for thousands of people. One in 25 people carry the CF gene, it only needs 2 people with a CF gene to have a child - they have a 1 in 4 chance of producing a CF baby. We now test babies at birth, and success in this current research would mean that a baby could be treated soon after birth, dramatically reducing the perpetual congestion, which takes many lives at present, giving the CF sufferer a better quality of life and extending their lives. A big thank you to all our supporters and we look forward to seeing you next year. Once I have booked the dates, I will let you know. To find out more about the work of the Honiton branch of the CF Trust, telephone (01404) 44043.

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