Cystic Fibrosis Association of Ireland
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Mission Statement
Cystic Fibrosis Ireland (CFI), formerly the Cystic Fibrosis Association of Ireland, is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with Cystic Fibrosis in Ireland. CFI also co-operates with medical professionals to give maximum assistance to both parents and children / adults with Cystic Fibrosis. We are supported by fundraising and voluntary contributions and are solely concerned with the well-being of people with Cystic Fibrosis. We Provide: • Funding towards new CF Units around the country, including dedicated in-patient, day care and out-patient facilities • Advocacy to shape government policy, for example • Funding for medical and scientific research aimed at understanding, managing and treating CF • Funding specialist CF multi-disciplinary posts in hospitals throughout Ireland • Advice, information and advocacy services • Exercise, Transplant and Fertility Grants • Regular information updates on new treatments in CF
About This Cause
Cystic Fibrosis & the Work of the Cystic Fibrosis Ireland Cystic Fibrosis Ireland 24 Lower Rathmines Road, Dublin 6. Tel: 01 496 2433 Fax: 01 496 2201 Web: www.cfireland.ie Email: info@cfireland.ie LoCall: 1890 311 211 What is Cystic Fibrosis? Cystic Fibrosis (CF) is a life-threatening, inherited disease that primarily affects the lungs and the digestive system. This lifelong condition usually becomes more severe with age. A build up of mucus can make it difficult to clear bacteria and leads to cycles of lung infections and inflammation, which can eventually lead to damage of the lungs. The symptoms and severity of CF vary from person to person. Ireland has the highest incidence of CF in the world with almost 7 in every 10,000 people with the disease. The incidence of CF in Ireland is almost 3 times the average rate in other EU countries and the United States. Life expectancy and quality of life has increased steadily over the past 20 years thanks to research and improved management of the disease What causes Cystic Fibrosis? Cystic fibrosis is caused by a defective gene (CFTR). This gene normally makes a protein that controls the movement of salt and water in and out of our cells. For people with CF, this protein is faulty and does not function properly. Approximately 1 in 19 Irish people are classed as carriers of the defective CF gene. If both parents are carriers of the faulty gene, their child has; • 25% chance of being born with CF • 50% chance of being a carrier, but not having the disease • 25% chance of not having CF, and not being a carrier Symptoms of CF The faulty CFTR gene causes a thick and sticky mucus to be produced that damages organs, particularly the lungs and the digestive system. A build up of mucus makes it easier for bacteria to grow and cause infections, and also makes it difficult for the body to release enzymes to digest food. Early symptoms include failure to gain weight despite a good appetite, respiratory infections, cough, wheezing and breathing difficulties. The symptoms and severity of CF vary from person to person. Treatment and Management of CF Early diagnosis and careful management of the condition is transforming the outlook and more and more children with CF are now emerging into adult life with relatively little lung damage. Treatment and management of CF includes: • Physiotherapy and Exercise to clear thick mucus from the lungs • Nutritional management – enzyme supplements must be taken with each meal and vitamin intake should be monitored • Medication involving long-term antibiotic treatment • Inhalation therapy Is there a cure? There is no known cure for CF. The CF gene was detected in 1989 and the discovery of a cure comes closer all the time. Medical and scientific research has greatly improved the treatment of CF, thereby increasing life expectancy. Research is on-going in the endeavour to find a cure. About the Cystic Fibrosis Ireland Cystic Fibrosis Ireland is a voluntary organisation that was set up by parents in 1963 to improve the treatment and facilities for people with CF in Ireland. We are supported by fundraising and voluntary contributions and are solely concerned with the well-being of people with CF. The CFI also co-operates with medical professionals to give maximum assistance to both parents and children/adults with CF. The Work of the Cystic Fibrosis Ireland We Provide: Funding towards new CF Units around the country, including dedicated in-patient, day care and out-patient facilities Advocacy to shape government policy, for example, through the groundbreaking ‘Pollock Report’ on CF services and improved lung transplantation rates in Ireland Funding for medical and scientific research aimed at understanding, managing and treating CF Funding specialist CF multi-disciplinary posts in hospitals throughout Ireland Advice, information and advocacy services Exercise, Transplant and Fertility Grants Regular information updates on new treatments and developments in CF, especially through our website and bimonthly newsletter ‘Spectrum’. Support for public awareness about CF Fundraising We undertake a variety of fundraising initiatives on an ongoing basis to generate the income necessary to sustain these services. Income and sponsorship comes from a number of sources at both a national and local level, including: • Community fundraising through events ranging from local events to national fundraising • Our national fundraising week held in April every year – ’65 Roses week’ • Corporate sponsorship and support, including our adoption as a ‘charity of the year’ • Legacy and once-off donations See listings of local fundraising events on our Fundraising Calendar at www.cfireland.ie What you can do to help? • If you are a parent or person with CF you can join the CFI (free membership) • Volunteer by calling the fundraising team in the National Office • Donate online on our website • Support our fundraisers by donating online at www.mycharity.ie • Ask your workplace to nominate CFI as their charity of the year • Send a Donation to our National Office • Set up a Standing Order by completing the form attached It is vital that as many people as possible support our work in improving the quality of life for people with CF by making a regular contribution to the Cystic Fibrosis Ireland. Help us continue our vital work. Thank you for your support