What legacies achieve

More people are living longer with CF because of improvements in treatment and care. When the CF Trust was founded in 1964, a baby with CF was lucky to reach the age of five. Today, around half of those with CF can expect to live past 41 years.

Our progress

Here are some of the CF Trust's recent advances, made possible through the generosity of our supporters:

• In 2002 we set up the UK Gene Therapy Consortium, bringing together 80 scientists working across the UK on gene therapy. Effective gene therapy will prevent the lung damage that kills 90% of people with CF from developing
• In 2006 we implemented the peer review programme at CF Centres and Clinics in the UK, raising the standard of care for those with CF
• As a direct result of the peer review programme, over £14 million of additional NHS funding has been pledged to improve care
• In 2007 newborn screening across the UK was introduced, after over 10 years of campaigning by the CF Trust
• In 2009 the first dose of gene therapy was given in a pilot study to patients with CF

In addition to a wave 1 gene therapy product, work is also underway on a wave 2 gene therapy product. As with all new therapies, it is likely that there will need to be a few rounds of development before the definitive product can be reached. We need funding to continue to refine gene therapy to improve its effectiveness and make it easier to use. The Trust has committed nearly £11 million over the next three years. We also invest hundreds of thousands of pounds on other non gene research each year.

Legacies are a vital source of funds, accounting for around 10% of our income. Some of the projects which we have funded in recent years have only been made possible thanks to the financial help of legacies received.

In 2009 we received a legacy of £77,000 that is helping to fund the training of a new specialist CF consultant at the CF unit at Wythnshawe Hospital, Manchester. In the same year, Mrs Margaret Haigh left us a legacy for £1,000. Her granddaughter has Cystic Fibrosis and she wanted to support research the Trust is funding to find effective treatments for Cystic Fibrosis.

We need your help to continue to fund work to increase length and quality of life for those with Cystic Fibrosis.