News & Upcoming Events
- Approval of the Drug Pirfenidone for the treatment of mild to moderate pulmonary fibrosis.
- Cork Meeting Group
Thank You & Well Done to all the Ladies who took part in this years Mini-Marathon!
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 via phone @ 086 8715264.
NEWS & EVENTS
ILFA is 10 years old in 2012
Interfaith ceremony of "Healing, Thanksgiving and Commemoration"
To celebrate our 10th Anniversary, ILFA is holding an interfaith ceremony of "Healing, Thanksgiving and Commemoration". All are welcome: patients, carers, family members, friends, fundraisers, healthcare professionals and all those associated with Lung Fibrosis.
Date: Saturday 12th May 2012
Venue: Our Lady of Mount Carmel, Whitefriar Street Church, Aungier Street (George’s Street), Dublin 2.
Time: From 4-5pm, followed by a tea and coffee reception in the Church Hall.
Remembrance List
For the Commemoration part of the ceremony, we will have a candle lighting ceremony and the names of Lung Fibrosis patients who have passed away will be read out from the altar. If you would like your loved one’s name included on the Remembrance List, please contact ILFA.
Readings, poems, reflections
Please contact ILFA if you have any favourite readings, poems or reflections that you think would be suitable for our themes of "Healing, Thanksgiving and Commemoration". We will select the most appropriate items at the start of March for inclusion in the Order of Service. We would love to hear from you
RSVP by 30th April. Please click here to contact ILFA or alternatively write to ILFA, P.O. Box 10456 or call 086 057 0310
We look forward to welcoming you all on May 12th.
Tip of the week
Tip No. 5 Portable Oxygen
Some Lung Fibrosis patients may need to use supplemental Oxygen. We use more oxygen when we move around compared to when we sit still. Using portable oxygen can sometimes give you more energy.
If you use portable oxygen, always ensure that your oxygen cylinders are full before leaving the house. If you are going on a journey, bring a spare oxygen cylinder in case of emergency and ensure that you have enough oxygen for your outbound and return journey
Click here to read previous tips.
We would love to hear from you if you have a special tip, based on your experience, that you could share with other patients. Perhaps your tip could make a big difference to others!
To send your tip to ILFA, please click here.
"Calling All Cyclists ...
A sponsored cycle will take place on April 14th 2012 from Cork City to Galway City, in aid of ILFA. The cycle will take place in 2 stages (i) Cork to Limerick on 14/4/2012 and (ii) Limerick to Galway on 15/4/2012. For more information contact ILFA or email annecasey@live.ie
Cork Group Meeting
A group of people who have Lung Fibrosis hold an informal meeting at 11.00am on the last Thursday of every month in Restaurant/Bar of The Elm Tree in Glounthaune. Transport can be arranged if necessary.
If you are interested in going along contact Dave Mulcahy at 087 2865297 or at dave.mulcahy03@gmail.com or Pat and Anne Casey at 087 2835320/087 9854587 or at annecasey@live.ie
Oxygen supply
If you need extra oxygen cylinders and are having problems with your oxygen suppplier, please contact the ILFA Nurse Specialist. You can contact Lorna at 01 7166391 or 086 8715264.
Congratulations
Congratulations to Aine and Colm Power who took part in the Christmas Day swim in Garryvoe, East Cork, in aid of ILFA. Aine and Colm are pictured here after their swim, looking very fresh.
Aine said the experience was an enjoyable but cold one but she would be happy to do it all again next year. Many thanks to Aine and Colm for their brrrrravery !
ILFA on Facebook
Please click here to visit our Facebook page.
Kilimanjaro Climb in aid of ILFA
Congratulations to Caroline Rawdon, Mairead Diviney, Saileog O'Keeffe, Sinead O'Carroll and Angela Lyons who climbed Mount Kilimanjaro in December 2011 in aid of ILFA. Their on-line sponsorship page will remain open until febraury 2012.
If you would like to sponsor the girls, please visit their on-line fundraising page.
The photographs show Saileog and Mairead efore their departure to Tanzania, followed by the girls at the foot of the mountain and at the sumit. Once the girls have recovered, they have promised to write a piece for ILFA about their great adventure. Watch this space!
Well done and thank you to Caroline, Mairead, Saileog, Sinead and Angela.
Congratulations
Congratulations and heartfelt thanks to the McGowan family from Rooskey, Leitrim who organised a series of fundraising events for ILFA in memory of their mother Kathleen McGowan. Collette, Marie and Ryan presented a cheque for over 4000 euro to Terence Moran (ILFA Chairman) and Eddie Cassidy (ILFA Treasurer) following the ILFA AGM.
Irish Medical Journal
The October issue of the Irish Medical Journal featured a letter written on behalf of ILFA, by Nicola Cassidy (ILFA committee) and Lorna Murphy (Respiratory Nurse Specialist), in response to a article entitled "Potential Organ Donor Audit in Ireland". To read the response letter from ILFA, please click here.
Approval of Pirfenidone in EU
In 2010, InterMune announced that the Committee for Medical Products for Human Use (CHMP), the scientific body of the European Medicines Agency (EMA), had recommended the granting of a marketing authorisation for Pirfenidone for the treatment of mild to moderate pulmonary fibrosis.
This recommendation has now been forwarded to the European Commission for ratification. Ratification will result in approval for marketing Pirfenidone in all the twenty seven member states of the EU, including Ireland.
Preclinical and in-vitro evidence has shown that Pirfenidone has both anti-fibrotic and anti-inflamatory effects.
Professor Jim Egan of the Heart and Lung Unit, Mater Hospital, Dublin, who was also involved in the clinical trials evaluating Pirfenidone, said that "as the Mater University Hospital was an investigating centre I would be hopeful that the drug would be available for patients later this year."
ILFA Newsletter
To view ILFA's most recent Newsletter electronically Click here .
Alternatively, contact ILFA for a hard copy of the newsletter.
Upcoming Events
ILFA will celebrate its 10th year anniversary in 2012. Watch this space for upcoming events to help mark this great occasion.
A sponsored cycle will take place on April 14th 2012 from Cork City to Galway City, in aid of ILFA. The cycle will take place in 2 stages (i) Cork to Limerick on 14/4/2012 and (ii) Limerick to Galway on 15/4/2012. For more information contact ILFA or email annecasey@live.ie
The ILFA Interfaith Ceremony of "Healing, thanksgiving and Commemoration" will take place on Saturday May 12th 2012 at 4pm at Our Lady of Mount Carmel, Whitefriar Street Church, Aungier Street, Dublin 2. For more information, contact ILFA.
The 2012 Flora Women's Mini Marathon will take place in Dublin on Bank Holiday Monday 4th June at 3pm.
The first entry form will be in the Evening Herald on 22nd February. On-line entries can be made at www.florawomensminimarathon.ie
The closing date is Friday 20th April or when the maximum number of entries has been reached. Please register early to avoid disappointment.
Lets make 2012 our biggest mini-marathon ever! Please contact ILFA if you would like to join our mini-marathon team.
The Access and Mobility Expo 2012 will take place on Friday 25th and Saturday 26th of May in The City West Convention Centre, Saggart, Co. Dublin.
Click here to visit the website.
Please contact ILFA if you have any upcoming events that you would like posted on the ILFA website.