About Cystic Fibrosis (CF)

What is CF?

Cystic Fibrosis (CF) is the UK's most common life-threatening, inherited disease and affects more than 7500 babies, children and young adults.

Cystic Fibrosis is a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus.

At present there is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. One of the main objectives of the CF Trust is to fund this work.

People with CF are living longer than ever before. Until the 1930s, the life expectancy of a baby with CF was only a few months. Today the average life expectancy for someone with CF is around 31 years.

Who is the CF Trust?

The Cystic Fibrosis Trust is the UK's only national charity working to fund research into a cure and to ensure appropriate clinical care and support for people with Cystic Fibrosis (CF). Founded in 1964 the Trust's objectives are to:

Fund medical and scientific research to find a cure and provide effective treatments for Cystic Fibrosis;
Ensure appropriate clinical care for those with Cystic Fibrosis; and
Provide information, advice, support and, where appropriate, financial assistance.

Work that the CF Trust is doing

The Cystic Fibrosis Trust is committed to carrying out research, providing clinical support and giving information advice and support to help improve the lives of people with CF. The Trust supports ground-breaking research aimed at curing and treating CF. It currently spends Ł1 million a year on general medical and scientific research. To help improve the clinical care CF patients receive it has helped set up and staff 45 specialist CF treatment centres throughout the UK in the last 15-years. It also sets national standards on clinical care, provides a UK CF Clinical Database and measures levels of service providing. The Trust provides a confidential 9am-5pm helpline service for advice and support on any aspect of Cystic Fibrosis and information and advice to sufferers and their families on benefits, financial assistance and welfare grants.

Gene Therapy

90% of people with CF die of lung damage. Effective gene therapy will stop lung damage. The CF Trust fund groundbreaking gene therapy research to add a healthy copy of the faulty CF gene to the lungs of those with Cystic Fibrosis.

Recently scientists have developed a lead product and the CF Trust are planning a clinical trial for gene therapy to start in 2008. Ł4.6 million is needed to carry out this trial and turn research into reality.