Launch of 65 Roses Fundraising Week for CF

22 April 2010

The Cystic Fibrosis Association of Ireland (CFAI) launched its ‘65 Roses' awareness and fundraising appeal with help from TV gardener Diarmuid Gavin and Rose of Tralee Charmaine Kenny.  It is hoped the public will support this important cause by wearing a purple 65 Roses lapel badge which will be available from major shopping centres throughout the country.  The 65 Roses Week runs from Saturday 24th - Friday 30th April.  The term "65 Roses" has a special meaning for people with Cystic Fibrosis and their families as it is often how young children will first say "Cystic Fibrosis".

Speaking about his support for 65 Roses Diarmuid Gavin said: "My wife and I had the pleasure of meeting Orla Tinsley at an event last year and when I learned firsthand from Orla the issues for people living with CF in Ireland I wanted to do something to help.  By participating, I wish to ask everyone to buy a 65 Roses pin and show support for the great work of the CFAI."

Cystic Fibrosis is the most common life threatening inherited disease in Ireland. Years ago if a person was diagnosed with CF they would not live past secondary school age. Now, thanks to better management and treatment of Cystic Fibrosis, people are living longer and the predicted survival age of someone born in 1980 is now 30 years.

Despite recent improvements in investment in hospital services, the CFAI needs to continue to fundraise for vitally needed services and facilities.  Many of our hospitals are aging and do not have facilities that meet agreed standards on the treatment of CF. Many patients, their families and health care professionals have expressed their ongoing dissatisfaction with such problems and have asked for our help in building new or upgrading existing facilities.

In particular there is a need for:

• Dedicated facilities for CF patients in hospitals (out-patient Day Centres and in-patient EnSuite Isolation) built to a high standard with the best equipment to prevent cross infection
• Advocacy to ensure there are sufficient dedicated Lung Surgeons in Ireland to undertake double lung transplants for people with CF and to ensure the Human Tissue Bill is enacted by Government as soon as possible
• Sufficient funding to provide information, advice and support to our members
• More research into improving treatment to CF patients in Ireland as there are features of the disease that are more specific to Ireland

According to Philip Watt, CEO of the CFAI:  "There remains major gaps in CF services in Ireland despite recent progress, including the recently restated Government commitment to complete the new CF centre in St Vincent's by 2011. Because of the state of the economy we are now more reliant than ever on the support of the general public in funding vital CF services in Ireland. People are dying on the transplant list because of the snail pace of double lung transplantation in Ireland - 30 are waiting for transplants and only 2 have been carried out in Ireland in the last 2 years."

For further information on Cystic Fibrosis and CFAI visit www.cfireland.ie.