2014 ... A year in review
2014 was an incredibly busy and successful year for ILFA. This year we produced 3 bumper newsletters, developed 3 new information leaflets, held 2 patient information days and received 1 major award! Here are some more of the year's highlights.
The new year started with the ILFA Swim in Sandycove in Dublin on New Year's Day. A group of brave and dedicated swimmers took the plunge to raise valuable funds for ILFA.
In February, ILFA received a donation from ticket sales for "An evening with Liverpool Football Legends" thanks to Pamela Martin and The Liverpool Former Players Association. A great night was had by those who went to meet their football heroes.
The month of March was all about raising awareness; ILFA hosted a stand the Irish Respiratory Nurses Conference in Dublin and also attended the launch of Organ Donation Awareness Week.
In April, ILFA hosted a Patient Information Day in Belfast. The event was officially opened by Joe Brolly, RTE pundit and organ donation champion. Two new information leaflets called "Getting the most out of your hospital appointment" and "Advice for carers" and a new Patient Information Pack folder were launched.
Denise Dunne was appointed as Management and Development Officer for ILFA.
One of our youngest fundraising champions, Dylan O'Brien aged 8 years old, took part in the Great Ireland Run in Dublin and ILFA had more fundraisers who took part in the Great Limerick Run.
In May there was excellent news from the results of much anticipated international clinical trials. Research results showed that two drugs Nintedanib and Pirfenidone both slowed down the rate of progression of idiopathic pulmonary fibrosis. This significant research news was a major landmark in the fight against IPF.
A 40km and 100km cycle, organised by lung transplant recipient Paddy O'Mahony with the support of Dublin Fire Brigade, took place in May. The aim was to raise awareness about lung fibrosis and organ donation and approximately 100 cyclists took part. The cycle was started by ILFA patron Senator Feargal Quinn and ILFA Exercise Ambassador and Dublin GAA star Michael Darragh Macauley.
In June, following the medical card crisis, ILFA made a submission to the Public Consultation on Medical Card Eligibility representing and highlighting the special medical needs of those diagnosed with lung fibrosis.
We had fundraising champions taking part in events countrywide to raise valuable funds for ILFA's work. The Women's Mini-marathon and the Cork marathon, half-marathon and mini-marathon all took place on bank holiday Monday. ILFA had individuals, families and groups of friends taking part.
A table quiz organised by Lorraine Ryan and friends in aid of ILFA took place in Limerick and some ladies held coffee mornings around the country.
In September, ILFA delegates attended the European Respiratory Society Congress in Munich, Germany with 22,000 medical, nursing and science delegates. Our work on the ILFA 2000 Steps A Day exercise challenge was presented.
The EU IPF Patient Charter was launched in Brussels with support from many European politicians including Irish MEPs Mairead McGuiness and Sean Kelly.
The Pat Casey Memorial Cycle from Cork to Limerick and back took place in September and raised funds for ILFA and Cork University Hospital. The cycle was organised by Pat's wife Anne, son Daniel, and family and friends to celebrate Pat's life.
October was an incredibly busy month with the ILFA Ecumenical Service of Prayer and Remembrance on 4th October in the Mater Hospital Chapel. On 8th October, the Fergus Goodbody Memorial Lecture for healthcare professionals took place in Dublin with leading doctors sharing their insights on developments in the treatment of IPF including the guest speaker Professor Luca Richeldi, an internationally renowned IPF expert.
On 18th October, a Patient Information Day took place in Dublin and ILFA's new leaflet entitled "The treatment of IPF" was launched. We also had marathon runners participating in events in Cork and Dublin and the famous Great North Run in Newcastle, England. Other fundraising events included a darts tournament and a fancy dress party, and a number of newly wed couples made kind donations to ILFA in lieu of wedding favours.
In November "The ILFA 2000 Steps a Day Challenge for Lung Fibrosis Patients" won an Irish Healthcare Award for the Best Patient Organisation Project of the Year. We're still smiling with joy after receiving this wonderful accolade! The award is dedicated to the memories of Charles Lock, Denis Donaghy, John Glackin and Pat Casey who helped test the 2000 Steps a Day Challenge before its launch.
Professor Jim Egan and Nicola Cassidy were invited to attend and speak at the Advances in IPF Research conference in Copenhagen to an audience of specialist doctors.
In December, ILFA attended the British Thoracic Society Meeting in London and presented our work on the ILFA 2000 Steps a Day Challenge. Fundraising activities for December included the ILFA swim, a sky-dive and Christmas concert and sales of the ILFA Christmas cards.
Everyone at ILFA would like to send our heartfelt thanks to all our fundraising champions, sponsors, donors and volunteers who help support our work and raise awareness of lung fibrosis. Here's looking forward to 2015!