Welcome to the online press office of the Cystic Fibrosis Trust. This section gives you the latest news from the Cystic Fibrosis Trust and the world of CF, as well as key facts about Cystic Fibrosis and our latest statements and press releases. Please click here to find out more about our campaigning. If you are one of our fundraisers you can read other news that may interest you here.

LATEST NEWS STORIES

Spend the night with the spooks and paranormal expert Jason Karl
Most Haunted and Ghost Hunters presenter Jason Karl will be taking part in a Fright Night fundraiser at Ordsall Hall, Salford, on Saturday 15th November. If you would like to find out more or take part contact Natalie Paintin on 0845 859 1064 or email npaintin@cftrust.org.uk.

New pig model for Cystic Fibrosis research 26.09.08
US researchers have been developing a CF pig for use in research into Cystic Fibrosis. This successful programme has been announced in the journal Science today.

The Cystic Fibrosis Trust welcomes the development of a new model in pigs for Cystic Fibrosis. A large animal model of CF will for the first time allow new therapies aimed at curing CF to be developed and tested in a realistic setting.

This is an important step paving the way for new treatments, which correct the basic underlying defect to be used in people with Cystic Fibrosis. Advances such as this will lead to better treatments and ultimately a cure for the 8,000 people in the UK and over 100,000 worldwide living with this disease. You can read more at the University of Iowa website.

Prescription Charges
We welcome the announcement that people with long term conditions will eventually be exempted from paying prescription charges, and we look forward to hearing when this will apply to those with Cystic Fibrosis.

Make sure you get your flu jab!
People with CF should be immunised against flu each autumn. The vaccine is available from your GP practice. To find out more about getting a flu jab visit the NHS website or call NHS Direct on 0845 4647.

Deep RiverRock Belfast Marathon
We are thrilled to announce that we are the official charity for next year's Belfast City Marathon which takes place on Monday 4 May 2009. Find out more here.

Unexpected findings related to phthalate levels 08.09.08
The CF Trust wants to inform you of unexpected findings related to phthalate levels in urine of children with CF in a recent clinical trial. We have prepared this document to explain further and you can also look read some Frequently Asked Questions about phthalates.

New research into lung transplantation at Newcastle 19.08.08
Lung transplantation generally leads to good long-term results in patients with cystic fibrosis, according to new research carried out in the UK. Dr. Anthony De Soyza, of the University of Newcastle and colleagues, reviewed data on 176 patients who had undergone transplantation at their institution. Their findings, reported in the August issue of Thorax, revealed that Pulmonary function (FEV1 percent predicted) improved from a median of 21% pretransplantation to 78% after 1 year. Survival was 82% at 1 year, 62% at 5 years and 51% at 10 years.

"The study results," concluded Dr. De Soyza, "demonstrate that cystic fibrosis patients undergoing lung transplantation have excellent long-term survival results after the operation. Major work is however still required to increase donor numbers, and also to reduce the long-term side effects of anti-rejection drugs.

"The number of patients who die waiting for organs is around 40% to 50%, dependent on country."

Shameless star Ciaran Griffiths to abseil Old Trafford for the CF Trust 19.08.08
Actor Ciaran Griffiths will be making a leap of faith on September 20 when he takes part in an abseil from the North Stand at Old Trafford to raise vital funds for people with Cystic Fibrosis. 25 year old Ciaran, a Manchester United fan, is perhaps best known for his roles as Mickey Maguire in Shameless, and PC Gary Best in The Bill.

Benefit reforms July 2008
The Government has unveiled a Green Paper proposing a series of changes to the benefits system in England. It is proposed that Incapacity Benefit will be scrapped, and replaced with a new benefit called Employment Support Allowance (ESA). This move is designed to make the benefits system more straightforward and streamlined. The paper also sets out plans to further support disabled people in their effort to get back to employment.

For those currently claiming Incapacity Benefit, the move to ESA will not be implemented until 2013; but new claimants will recieve ESA from October 2008. A new medical assessment will be introduced, and following that, those who qualify as 'too ill' to work will not be forced to seek employment in return for their benefit.

The Cystic Fibrosis Trust will be giving full consideration to how the proposed changes will affect those with CF and will be submitting our views to the Department of Work and Pensions accordingly.

Watch the Breathing Life Awards on BT Vision
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Encouraging data presented at European CF Conference 13.06.08
Clinical research findings regarding the drugs PTC 124 and VX-770 has been presented to delegates at the European Cystic Fibrosis Society (ECFS) Annual Meeting in Prague. PTC 124 could benefit those with the W1282X mutation, also known as the 'stop' or 'nonsense' mutation. VX-770 could benefit those with the G551D mutation.

Rosie Barnes, Chief Executive of the Cystic Fibrosis Trust said: "Both of these studies are very encouraging, as each drug could benefit about 5% of people with CF in the UK with a specific mutation of the CF gene. We look forward to hearing more as research progresses. However most people with CF in the UK, over 75%, have the mutation known as Delta F508, which would not be responsive to either of these drugs. The Cystic Fibrosis Trust is working on a gene therapy research programme which is designed to address the genetic fault which causes CF, irrespective of which mutation it is. The research taking place in the UK and around the world leaves us optimistic that the prognosis for those with CF will continue to improve significantly and steadily."

Behind the headlines
Our response to some recent issues that have hit the headlines can be found in the Behind the Headlines section.