News and Upcoming Events 

 

 

Would You Like To Become More Involved With ILFA?

Perhaps you could do a once-off fundraising event such as a coffee morning or maybe you would be interested in setting up a local ILFA branch where you live.

You can decide what level of involvement you would like to have. If you are interested in getting more involved ILFA would like to hear from you.

You can contact us via post @ PO Box 10456, Blackrock, County Dublin; via email @ info@ilfa.ie or by calling 086 871 5264

 

THE ACTIVITIES OF THE COMMITTEE OF THE

IRISH LUNG FIBROSIS ASSOCIATION

 

  • The Irish Lung Fibrosis Association (ILFA) was established in 2002 in memory of Fergus Goodbody.
  • ILFA is a registered charity with the Company Registration Office.
  • Charitable exemption number CHY 15462
  • ILFA has a Memorandum of Articles.
  • The aims of ILFA are to promote Research, Education, and Support
  • Our Patrons are Brian O’Driscoll, Charlie Bird, Senator Feargal Quinn, and Andrea Corr.
  • Our Exercise Ambassador is Michael Darragh Macauley.
  • The committee is made up of volunteers who have all been touched by Lung Fibrosis in some way.
  • The ILFA Directors are Terence Moran (Chairman and Secretary), Eddie Cassidy (Treasurer), Professor Jim Egan, Nicky Goodbody, Liam Galvin and Nicola Cassidy. Committee members are Martin Troy, Marie McGowan, Claire Tunissen, Sancha Mulcahy, Dr Emmet McGrath, Dr Kate O'Reilly, Lindsay Brown and Lynn Fox.
  • ILFA have representatives in some counties.

            Helen Durney – Kildare representative

            Lorraine Ryan – Limerick representative

            Collette McGowan – Leitrim representative

  • All of our finance comes from individual and corporate donations and from the fundraising activities of our supporters. All money raised goes towards meeting our aims and helping the patients and families of those affected by Lung Fibrosis.  
  • The committee meet every 4-6 weeks in Dublin. An Agenda for the meeting and the Minutes of the previous meeting are circulated to all the committee members in advance by email. 
  • At every ILFA meeting, a financial report is presented by the Treasurer. 
  • The financial accounts are audited yearly by a professional accounting firm and subsequently forwarded to the Company’s Registration Office, in accordance with the legal requirements for Annual Returns. 
  • The Treasurer is responsible for lodging all donations and monies received to the ILFA current account and deposit account. All donations and sponsorship received from individuals, groups, and companies are acknowledged in writing by the Treasurer and a receipt issued. The Treasurer keeps detailed records of all incoming and outgoing funds. Each cheque issued by ILFA must be signed by 2 authorised members of the committee. 
  • The AGM takes place yearly in Dublin. At the AGM, the Directors present a short report for the year. The audited financial accounts for the year are presented to those present and the auditors are re-appointed for the following year by the Directors. Other ordinary business is also discussed if necessary. 
  • ILFA is part of the Irish Donor Network (IDN), a group that seeks to represent patient organisations with an interest in organ donation. 
  • ILFA is a member of the Irish Lung Health Alliance.
  • ILFA frequently corresponds with the Minister for Health, the HSE, the IDN, the VHI, and other organisations and authorities, in the interest of progressing specific patient issues and to promote awareness of Lung Fibrosis. 
  • Members of the ILFA Committee have made representations to and met with the Minister for Health at the Department of Health & Children and at Leinster House on various occassions. 
  • ILFA maintains a database of members’ names and addresses for those registered with the charity. 
  • The postal address for ILFA is: P.O. Box 10456, Blackrock, Co. Dublin. The email address for enquiries is: info@ilfa.ie 
  • The Secretary (or an appointed committee member) manages all correspondence received via post or email. 
  • ILFA helps facilitate the fundraising activities of our supporters. We supply t-shirts, vests, sponsorship cards, and balloons to those taking part in events. Volunteer fundraisers usually contact ILFA via the website or by telephone. A committee member has a designated mobile phone for responding to fundraising requests for ILFA merchandise. 
  • The Womens’ Mini-Marathon in Dublin is the biggest fundraising event of each year for ILFA. The ILFA team meet up for a group photograph before the race and meet again afterwards for light refreshments in the city centre. Members of the committee are usually in attendance to provide support. 
  • The Annual Christmas/New Year Swim is another event long associated with ILFA. The original swim took place in Seapoint (Dublin) and other organised swims have also taken place in North Dublin and Cork.
  • ILFA is registered with www.everydayhero.ie for on-line donations and this involves an annual charge. The Treasurer has secure access to the administration page to monitor the amount of donations received on-line. 
  • Members of the committee help to keep the website (www.ilfa.ie) up to date with current news and developments that impact on patients and their families.
  • Members of the committee help to keep the ILFA Facebook page up to date with current news.
  • ILFA produces 3 newsletters annually for patients. The newsletters are compiled by a committee member. The newsletters are posted out to our members, to the Heart & Lung Transplant Ward at the Mater Hospital, to other hospitals throughout Ireland, and are available to download from the website. 
  • ILFA holds two Patient Information Days annually. To date, the Patient Information Days have been held in Dublin, Cork, Belfast, Galway, Thurles and Limerick. Invited speakers give presentations to patients and their families about the medical, social, and practical aspects of living with Lung Fibrosis. The Patient Information Days are a valuable opportunity for patients with Lung Fibrosis and their families to meet with each other. When available, members of the committee attend the Patient Information Days to help with the running of the event. 
  • The Inaugural Fergus Goodbody Lecture was held in 2010 and an international expert in Respiratory Medicine was invited to Dublin to present a lecture on recent advances in Lung Fibrosis to medical, nursing, and research staff. It is envisaged that this will become a regular event for ILFA every 2 years. 
  • ILFA produces several publications including the ILFA Newsletter, the Directory of Services for Lung Fibrosis, and Patient Information Leaflets. All publications are circulated to the committee before printing. 
  • In 2011, ILFA commissioned a questionnaire on the preferred donor transplant options (i.e. an opt-out system or an opt-in-system) of members of the public. 

 

Please feel free to contact us by writing to; ILFA, P.O. Box 10456, Blackrock, Co. Dublin  or  email us at;  info@ilfa.ie