Cystic Fibrosis. and the work of Cystic Fibrosis Ireland. Cystic Fibrosis Ireland 24 Lower Rathmines Road, Dublin 6. LoCall:

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1 Cystic Fibrosis and the work of Cystic Fibrosis Ireland Cystic Fibrosis Ireland 24 Lower Rathmines Road, Dublin 6 Tel: Fax: LoCall: Web: info@cfireland.ie

2 What is Cystic Fibrosis? Cystic Fibrosis (CF) is an inherited disease that primarily affects the lungs and the digestive system. Ireland has the highest incidence of Cystic Fibrosis in the world with almost 7 in every 10,000 people with the disease. The incidence of Cystic Fibrosis in Ireland is almost 3 times the average rate in other EU countries and the United States. What causes Cystic Fibrosis? People with Cystic Fibrosis have two copies of an altered gene (CFTR), one inherited from each parent. This gene normally makes a protein that controls the movement of salt and water in and out of our cells. For people with Cystic Fibrosis, this protein is faulty because the altered gene does not function properly. Approximately 1 in 19 Irish people are said to 'carry' one copy of the altered gene that causes Cystic Fibrosis Ñ these people do not have Cystic Fibrosis. Both copies of the gene must be altered in order to have Cystic Fibrosis. If both parents 'carry' the faulty or defective gene, their child has: 25% chance of being born with Cystic Fibrosis 50% chance of being a healthy carrier of the altered gene, but not having the disease 25% chance of not having Cystic Fibrosis, and not being a carrier of the altered gene PARENT CARRIER 01 PARENT CARRIER 02 PERSON WITH CF 'CARRIER' 'CARRIER' Not a 'CARRIER'

3 what are the symptoms? 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, chest infections and breathing difficulties. The symptoms and severity of Cystic Fibrosis vary from person to person. Treatment and Management Early diagnosis and careful management of the condition is transforming the outlook and more and more children with Cystic Fibrosis are now emerging into adult life with relatively little lung damage. Treatment and management of Cystic Fibrosis includes: Physiotherapy and Exercise to clear thick mucus from the lungs Nutritional management Ñ 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 Cystic Fibrosis, however, medical and scientific research has greatly improved the treatment of this disease in recent years. Research is ongoing in the endeavour to find a cure. Life expectancy and quality of life has increased steadily over the past 20 years thanks to research and improved management of the disease.

4 About Cystic Fibrosis Ireland Cystic Fibrosis Ireland (CFI), formerly the Cystic Fibrosis Associaiton 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. CFI provides: Funding towards new Cystic Fibrosis 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 Cystic Fibrosis services and campaigning to improve lung transplantation rates in Ireland Funding for medical and scientific research aimed at understanding, managing and treating Cystic Fibrosis Funding for specialist Cystic Fibrosis multidisciplinary posts in hospitals throughout Ireland Advice, information and advocacy services Exercise, Transplant and Fertility Grants Regular information updates on new treatments and developments in Cystic Fibrosis, especially through our website and bimonthly newsletter Spectrum Support for public awareness about Cystic Fibrosis

5 Standing Order Form The following information must be provided and signed for authorisation to set up a standing order. Personal Details Name: Address: Signature: FAO Branch Manager You are authorised to set up a standing order on my/our account with the following details: Bank Details Bank Name: Branch: Address: Account Details Sort Code: Account Number: Monthly Donation ( ): Beneficiary Bank Details Bank Name: Allied Irish Bank (AIB) Branch: Rathgar, Dublin 6 Account Name: CFI Main Account Sort Code: Account Number: Note: Donations of 250 or more in any one tax year may be eligible for tax relief. Please complete this form, detach and return to: Cystic Fibrosis Ireland, 24 Lower Rathmines Road, Dublin 6. Thank you for your support

6 Ireland has the highest incidence of Cystic Fibrosis in the world, but we are still some distance from having the world class facilities needed by our patients. Your contribution, great or small, will help fund facilities, clinical staff, equipment and research, as well as provide vital advice and support for our members. We greatly value any support you can give. Philip Watt CEO CFI

7 fundraising initiatives generate the income necessary to sustain and develop cf services Ñ this Income and sponsorship comes from a Number of sources at both a national and local level. These sources include: Community fundraising events Our national fundraising week held in April every year '65 Roses National Awareness Week' Corporate sponsorship and support, including adoption of CFI as a 'charity of the year' Legacy and one-off donations What you can do to help: Organise a fundraising event in your locality Volunteer by calling the fundraising team in the National Office Support our fundraisers by donating online at Ask your workplace to nominate CFI as their charity of the year Send a Donation to our National Office or donate online on at 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 Cystic Fibrosis by making a regular contribution to Cystic Fibrosis Ireland. See listings of local fundraising events on our Fundraising Calendar at Follow us on & Facebook: Cystic Fibrosis Ireland Help us continue our vital work.

8 Local Branch Contacts: Branch Name Number Carlow Leigh Bolger Cavan Karen Keoghan Clare Kieran McCarthy Southern (Cork) Cathy Carlton Denise Taylor Donegal Brendan McLaughlin Eastern Mary McCarroll (inc Dublin) Dundalk Adrian O'Hagan Galway Marie Brennan Kerry Betty Hand Kildare Oliver Delaney Kilkenny Carmel Delaney Limerick Owen Kirby Louth Martha Reilly Mayo Edel Fahey Meath Loretta Allen Byrne Midlands Gerry Johnson Esther L'Estrange Sligo Iris Murphy Tipperary Mandy Quigley Waterford Bernadette Power Wexford Fiona Bodels Regional Branches of CFI also work together on hospital build projects to improve facilities and services at a local level. These include: TLC4CF: Tipperary, Limerick and Clare Branches dedicated to improving services for people with CF in the Mid-West. Contact: Katie Murphy CF West: Mayo Branch fundraising efforts to build a day care unit on the grounds of Mayo General Hospital. Contact: Edel Fahey Life Matters 4CF: Incorporating Louth and Meath Branches, dedicated to improving facilities in Drogheda, Co Louth. Contact: Loretta Allen Byrne on Completed and published by Cystic Fibrosis Ireland Charity: CHY6350 Company Reg: