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Cystic Fibrosis Trust Gene Therapy Appeal

Cystic Fibrosis TrustPress Release

A campaign to raise £6 million in just six weeks to fund an innovative gene therapy trial is under way, led by the Cystic Fibrosis Trust. Thousands of people living with the genetic condition, Cystic Fibrosis (CF), may be given the opportunity to enjoy a better quality of life if this new innovative gene therapy trial goes ahead and proves successful.

The UK CF Gene Therapy Consortium, funded by the Cystic Fibrosis Trust, has been working for ten years to find a way of inserting a healthy gene into a CF patient's lungs to ensure that the damaging effects of the faulty CF gene are stopped in their tracks. They are now at an exciting stage and are ready to test the product on patients in a multi-dose clinical trial which aims to determine whether this new treatment works.

The charity is pushing to raise the £6 million needed to fund the trial. Emma Lake, an Expert Patient Adviser for the CF Trust and a trial participant said:
"Those who have been selected for these trials have gone through lots of tests and are ready to start these exciting trials. We are hoping that the result will be a way to stop the damage to CF patients lungs. It will be so disappointing if this extra money is not raised by the end of October."

Matthew Reed, Chief Executive of the Cystic Fibrosis Trust said:
"We have to date raised well over £30 million to develop this ground breaking treatment which has the potential to lengthen a CF patient's life by many many years. We are hoping that the funding for this trial will be made available to us by 31 October so that we can give thousands of CF families throughout the world hope in achieving a better and longer life.”

If the money is raised the trial will go ahead in the Spring 2012.

There are events across the country to raise money for the CF Trust's Gene Therapy Appeal. Donations to the appeal can be made at:
More information about Cystic Fibrosis is available from the Cystic Fibrosis Trust’s website:


For all media enquiries, please contact:
Louise Banks on 020 8290 7912 or email

Notes to Editors

  • The Cystic Fibrosis Trust is the UK’s only national charity dealing with all aspects of Cystic Fibrosis (CF). It funds research to treat and cure CF and aims to ensure appropriate clinical care and support for people with Cystic Fibrosis.
  • Cystic Fibrosis (CF) is one of the UK’s most common life-threatening inherited diseases. Cystic Fibrosis is caused by a single defective gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.
  • Each week five babies are born with Cystic Fibrosis and two young people die – 90% from lung damage. Only half of those living with Cystic Fibrosis are likely to live past their late 30s, although improvements in treatments mean a baby born today is expected to live even longer.
  • Further information can be found on our website Help and advice for those affected by Cystic Fibrosis is available through our Helpline on 0300 373 1000. For further information, media should contact Louise Banks on 0208 290 7912 or email


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