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

NEWS and EVENTS

 

New ILFA leaflet on Managing Breathlessness

ILFA is pleased to announce the launch of our new leaflet entitled 'Managing Breathlessness - Advice for Lung Fibrosis Patients'

Click here to read the leaflet online.

If you would like to receive a copy by post and/or a hand-held fan, please call ILFA on 086 871 5264 or email info@ilfa.ie

 

 

ILFA newsletter Spring 2017

Click here to read the latest newsletter from ILFA.

If you would like to be added to ILFA's mailing list and receive a newsletter by post, please register here.

 

The Fergus Goodbody Memorial Lecture 2017

The Fergus Goodbody Memorial Lecture for healthcare professionals took place in Dublin on 14 February 2017 and was delivered by Professor Jurgen Behr from Munich. Dr Emmet McGrath (St Vincent’s University Hospital, Dublin) and Professor Jurgen Behr gave two superb evidence-based medical lectures on interstitial lung disease (ILD) and idiopathic pulmonary fibrosis (IPF). The video of their presentations can be viewed here. 
 
 
 
 

Spring Patient Information Day

The Spring ILFA Patient Information Day will take place on Saturday 22nd April from 10am to 1pm at the Clayton Hotel, Clarion Road, Sligo.

Speakers will include
  • Dr Emmet McGrath - Respiratory Consultant, St Vincent's University Hospital, Dublin
  • Tara Hannon - Respiratory Physiotherapist, University College Hospital, Galway
  • Lynn Fox - Respiratory Nurse Specialist, Mater University Hospital, Dublin
  • Vivienne Vize and Zita Lawlor - Lung Transplant Cooordinators, Mater University Hospital, Dublin

All are welcome to this free event to learn more about lung fibrosis. 

For more information and to register for free, please contact ILFA on 086 871 5264 or email info@ilfa.ie

 

The Denise Cassidy Memorial Prize 2017

Would you like to honour your lung fibrosis healthcare hero?

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around"  -  Leo Buscaglia

ILFA is excited to announce the 2017 Denise Cassidy Memorial Prize for excellence in healthcare. This award recognises and celebrates the kindness, compassion and humanity of a hospital healthcare worker to a lung fibrosis patient or their family. Patients and carers are invited to nominate a person who showed you or your loved one a special act of kindness that helped you cope with your illness better.

Please fill out the nomination form below and tell us why your healthcare hero deserves to be honoured. You can nominate a doctor, nurse, physiotherapist, social worker, counsellor, dietician, pharmacist, healthcare assistant, member of the chaplaincy team, clerical worker, catering or cleaning staff - in fact anyone who works in a hospital. Everyone who is nominated for the award will receive a certificate of excellence and the overall winner will receive a special commemorative Dublin crystal award.

Click here to read more about this article.

 Click here to download the nomination form.

 

Would you like to test a new app developed to help people with lung fibrosis?

This app is an electronic health diary which has been developed by patientMpower Ltd., an Irish company. patientMpower want to find out if people with lung fibrosis find this app useful and are looking for volunteers to take part in a survey. This information will be used to refine the design of the app to make it easier to use.

If you take part, you would use the app for about a month and then answer a questionnaire to give your feedback. In this survey, you can, if you wish, measure breathing tests at home using a small spirometer which will record the breathing test information directly in the app.

The patientMpower app works on any smartphone or tablet device (like an iPad). The idea is that you will use your mobile phone to keep a diary of symptoms and other factors related to your lung health. For example, you can keep track of the number of steps you take each day or your level of breathlessness. If you use the spirometer as part of this survey, the breathing test information will be recorded. The app can also be used as a reminder to take your medicines each day.

When attending clinic appointments, it may be useful to have this type of information to hand so that you can tell the doctor or nurse about issues that may have been troubling you.

The good news is that it is all free and if you like the patientMpower app you can keep using it for as long as you want. So if you have a smartphone or iPad-type device and would like to take part in this survey please contact the Irish Lung Fibrosis Association at 086 871 5264 or e-mail info@ilfa.ie for an information pack. 

  

Hand held fans

Breathlessness is a common and distressing symptom for patients wih lung fibrosis that can impact on quality of life and prevent patients carrying out their daily activities. It is important for patients to be able to manage their breathlessness.

Research suggests that using a hand-held fan to blow air across the nose and mouth can help reduce the sensation of breathlessness for patients with breathing difficulties.

ILFA's new hand-held fans are now available for patients, respiratory nurses and physiotherapists to order free of charge.
 
We would love your feedback and ask that you fill out a short survey after using the fan. The survey is available in paper form or you can click the link to answer the survey online.
 
Call ILFA on 086 871 5264 or email info@ilfa.ie to order a hand-held fan.

 
 

Tip of the week 2017

Power nap
Take forty winks. Why not try to take a power nap for 20 minutes during the day. Try to nap before 4pm and always set your alarm clock for 20 minutes to avoid over sleeping. Short power naps can help you relax, leave you feeling refreshed and revitalised and could result in increased energy.

 

Inspirational Quote of the Week

"Don't count the days. Make the days count." Muhammad Ali


Click here to read the Inspirational Quotes for 2017 

 

 

ILFA Patient Charter wins a national award for Plain English

ILFA is delighted to announce that the National Patient Charter for Idiopathic Pulmonary Fibrosis won a Plain English Award on 9th Februaury at a ceremony in the President's Hall at the Law Society in Dublin. The charter was the winner of the 'Health - Patient Information Leaflets' category.

Nicola Cassidy (ILFA Director) attended the ceremony along with Matt Cullen from Dublin and Anne Casey from Cork who represented patients and carers, who are central to the charter. Everyone at ILFA is thrilled with the win and the glowing compliments that the charter received!!!

Thank you to the National Adult Literacy Agency and the sponsors Mason, Hayes and Curran for a wonderful time at the awards ceremony on 9th February.

 

The Fergus Goodbody Memorial Lecture

The Fergus Goodbody Memorial Lecture took place on 14th February 2017 at the Royal College of Surgeons in Dublin. It was a great success and healthcare professionals from all over Ireland attended the event.

Professor Jim Egan (Mater Misericordiae University Hospital) chaired the event and the invited speakers; Dr Emmet McGrath (St Vincent's University Hospital) and Professor Jurgen Behr from Munich delivered two fantastic state-of-the-art lectures on interstitial lung disease and idiopathic pulmonary fibrosis.

Thank you to everyone who supported this important and valable educational event.

The photo shows Professor Jim Egan, Dr Emmet McGrath, Professor Jurgen Behr and Terence Moran (ILFA Chairman).

 

Advancing in IPF Research (AIR)

The 6th AIR meeting took place in Vienna, Austria on 18th and 19th of November and brought together almost 300 respiratory healthcare professionals from across Europe. This unique meeting focussed on recent developments in interstitial lung disease (ILD) and idiopathic pulmonary fibrosis (IPF) and some of the world’s leading experts in this field shared their insights. Professor Jim Egan and Nicola Cassidy from ILFA were invited to speak at this prestigous conference.

Click here for a report on the highlights of the 2016 AIR presentations.

 

Happy New Year

Happy New Year everyone! The ILFA committee would like to wish you a happy, healthy, and prosperous 2017!

2017 is a milestone year for ILFA as we celebrate our 15th year anniversary! We look forward to working with you to continue to raise awareness and support patients and families affected by lung fibrosis.

 

ILFA Christmas Swin 2016 

The annual ILFA Swim took place on St Stephen's Day. It was a beautiful sunny day, with a lovely calm sea and the event was well attended by a lot of loyal suporters. 

Ten swimmers bravely participated. First in was Honora Ni Chrioghain, followed by Chloe Meehan and Colin Ireland.  Next in was Professor Jim Egan, whose swim was accompanied by great cheers. Later arrived Giles Keane, all the way from Brussels. He was followed by Christopher and Colin Lock, who were supported by Claire Tunissen and her lovely dog Lottie. Last but certainly not least were Michael Darragh Macauley - ILFA Exercise Ambassador - and his cousin Ken Powell and brother in law John Sheridan. They were cheered on by Edna Powell, and Margaret, Rebecca, Ciara and Daniel Sheridan. 

Thanks to Edna for providing a box of Heroes later at Eagles House, where the group warmed up. The event was a great success, with Giles Bailey shaking the ILFA bucket once more, and it raised around €650. Well done everyone!

     
     

 

ILFA Christmas cards

Thank you to everyone who supported ILFA's Christmas card campaign and helped raise awareness of lung fibrosis during the festive season.

 

 

ILFA Winter Newsletter is now available

Click here to read the 2016 ILFA Winter Newsletter.

If you would like to receive the ILFA newsletter by post, please call ILFA on 086 871 5264 or click here to register online 

 

ILFA Christmas Jumper Lunch 

The Dublin Support Group had a 'Christmas Jumper' Lunch at the Gresham Hotel, O'Connell Street, Dublin on Tuesday 6th December.


Thanks to Pam Martin for organising the festive get-together. Everyone had a great time.

 

The Midlands Support Group held their annual Christmas Lunch in Tullamore Co Offaly early in December.

 

 

 

 

 

 

 

Radio interview with Near FM

Thank you to Near FM's Lifeline programme for raising awareness of IPF on the airwaves on 29th November.

Dermot King and Nicola Cassidy received a very warm welcome from Mark Finnegan, Debbie McMahon and their colleague George Mulcahy.

Debbie interviewed Dermot and Nicola and asked about the symptoms of IPF, how the condition is diagnosed, treatment options, the importance of exercise and managing the condition.

Click here to listen to the podcast.

 

 

2016 Irish Healthcare Award for ILFA and partners

The 2015 'Love Your Lungs' campaign organised by Roche Products Ireland and Edelman in association with ILFA, COPD Support Ireland and the Asthma Society won the 2016 Irish Healthcare Award for Best Pharmaceutical Educational Project on 10th November.

Three inspiring patient videos were produced and a social media campaign was organised to encouage everyone to 'Love Your Lungs' and seek medical help if suffering from respiratory symptoms.

The prestigous Irish Healthcare Awards ceremony took place in Dublin on 10th November. ILFA was represented by Dolores Williams - star of the ILFA 'Love Your Lungs' video, and Nicola Cassidy and they were joined by our friends Damien Peelo and Erika White from COPD Support Ireland, Averil Power from the Asthma Society and members of the team at Roche Ireland and Edelman. ILFA is thrilled with the win !!!!!!!

Thank you to Roche Ireland and Edelman for organising and supporting this important lung health awareness campaign.

       

 

 

Autumn Patient Information Day

Thank you to everyone who attended the ILFA Patient Information Day at the Crowne Plaza Hotel in Santry, Dublin on Saturday 5th November.

Sincere thanks to our speakers; Dr Kate O'Reilly (Respiratory Consultant), Lynn Fox (Respiratory Nurse Specialist), Petra Grehan (Respiratory Physiotherapist), Professor Jim Egan (Respiratory Consultant) and Eamonn Costello (Patient MPower).

Thank you also to the attendees, volunteers, and oxygen company representatives for making the event a great success.

 

 

Ireland AM interview

Thank you to Ireland AM for a great interview with ILFA's Exercise Ambassador and GAA star Michael Darragh Macauley and his aunt Edna Powell, who described their family's personal expeerience of IPF and the importance of organ donation and lung transplantation.

Michael Darragh and Edna praised the staff at the National Heart and Lung Transplant Unit at the Mater Misericordiae Unversity Hospital for their tremendous work caring for patients.

Click here to watch the clip on TV3 player.

Well done Edna and Michael Darragh!

 

 

ILFA Service of Prayer and Reflection

Thank you to everyone who came along to the ILFA Service of Prayer and Reflection at Gort Muire, Balinteer on Saturday.

85 people attended and helped make the service a very special occassion.

ILFA is especially grateful to the clergy - the Reverend Vanessa Wyse Jackson (Rathgar Methodist Church), the Reverend Martin Kilmurray O.Carm. (Gort Muire) and the Reverend Charles Mullen (St Patrick's Cathedral), and to the readers, musicians and candle lighters for taking part in the special service.

We are also very thankful to everyone who brought along cakes and biscuits for the refreshments afterwards.

  

ILFA Pre-budget Submission

The 2017 Budget will be announced on Tuesday 12th October. ILFA made a pre-budget submission to Ministers Simon Harris, Finian McGrath and Pascal Donohoe.

Please click the link to read more.

 

 

Launch of 'Fight IPF'

On Monday 26th September, three new patient videos with Bob, Noreen and Pam were launched to help patients "Fight IPF".

The videos are helping to raise awareness and have been very well received. See the videos at www.fightipf.ie

Please click the link to read the press release that accompanied the launch.

 

 

IPF World Week

To mark IPF World Week, ILFA has produced two short videos featuring Dermot King and Finian McGrath T.D. Minister of State, Social Protection, Justice and Health with special responsibility for Disabilities. 

 

The first video is called "Living with IPF" and Dermot describes aspects of his daily routine and the things that hlp him manage his lung condition.

 

 

The second video is called "Raising awareness of IPF" and captures the time Dermot spent with Minister Finian McGrath in order to share his story about the challenges of living with IPF.

 

 

 

ILFA Newsletter for Autumn

The Autumn newsletter is now available.

Please click here to read the newsletter online.  If you would like to receive the ILFA newsletter by post, please call ILFA on 086 871 5264 or click here to register online

 

IPF World Week will take place from 17th to 25th September 2016

This initiative started in 2012 and unites IPF patient associations, healthcare staff and industry and helps to raise awareness of IPF. Each year approximately 35,000 patients in Europe are newly diagnosed with IPF and this figure is expected to increase in the future.

Some of the hospitals around Ireland will host information stands during IPF World Week. If you would like to help raise awareness among your friends and local community why not;

• tell someone you know about IPF,

• 'like' and 'share' ILFA's posts and tweets on Facebook and Twitter if you use social media,

• hold a coffee morning to raise awareness.

Please contact ILFA by emailing info@ilfa.ie or calling 086 871 5264 if you would like more information.

 

 

ICLAF

The 19th International Colloquium on Lung and Airway Fibrosis is taking place in Dublin Castle, Ireland from the 24th to 28th September 2016.

ILFA looks forward to hosting an information stand at this prestigous event and to welcoming the world's leading scientists, researchers and clinicians to Dublin

 

 

ILD Interdisciplinary National Network Conference

The ILD Interdisciplinary National Network’s Inaugural Conference will be he held 9-10th October 2016 at the Hyatt Regency Hotel in Birmingham, UK.~

ILD-INN Conference 2016 is a two day event packed with interactive workshops, networking sessions, and discussions promising to be informative, inspirational and engaging. 

The ILD-INN conference will offer a broad and inclusive range of talks on many of the interstitial lung diseases including idiopathic pulmonary fibrosis.


Click here for more informataion and to register http://www.conference.ild-inn.org.uk

 

2016 ILFA Service of Prayer and Reflection

The ILFA Ecumenical Service of Prayer and Reflection will take place on Saturday 15th October at 3pm in the Gort Muire Chapel, Balinteer, Dublin 14 (near to M50, Dundrum Shopping Centre, Balally luas stop). All are welcome.
 
A special candle lighting ceremony will take place to remember lung fibrosis patients who have passed away. If you would like your loved one remembered at the ceremony, please contact ILFA on 086 871 5264 or email info@ilfa.ie by the 16th September.

 

 

 

patientMpower tool for people with lung conditions

patientMpower, a digital health company based in Dublin is developing a tool for people with lung conditions to record information on their symptoms, breathlessness, use of medicines and other issues related to their lung health.

The information will be recorded on your smartphone or other device (for example, iPad or Android tablet). Collecting this information on a regular basis might be useful in helping people and their medical teams to better manage their lung health.

patientMpower is looking for volunteers to try out the first version of this tool so that we can get your feedback and improve it. If you are interested in trying out this new tool now please contact Gemma at ILFA on 086 871 5264 or patientMpower on 01 903 8558 or email info@patientmpower.com for further information.

Eamonn and Kerrill from patientMpower visited the Dublin Support Group on 2nd August to explain how the IPF app works for msart phones and tablets.

There was great enthusiasim for the app and we look forward to hearing how he volunteers testing the prduct get on.

 

 

Love Your Lungs

 

 

 The 2016 Pat Casey Memorial Cycle

Family and friends of Pat Casey (RIP) are organising a memorial cycle in Pat's honour to raise funds for ILFA and Cork University Hospital. Pat was a dedicated fundraiser for ILFA and a huge support and inspiration to others with IPF.

To celebrate Pat's life and to help raise funds, a cycle from Cork to Limerick and back to Cork will take place on Saturday 10th and Sunday 11th September 2016.
For more information please call Anne on 087 985 4587 or Brian on 086 088 1064 or emal annecasey@live.ie for more information.

 

Written Declaration 26/2016 on idiopathic pulmonary fibrosis

Monday 11th July 2016 will be remembered in the history books as an historic day for IPF!
 
In 11th July the Written Declaration on IPF was signed by 379 Members of the European Parliament. The Written Declaration is based on the EU Patient Charter and its successful adoption will send a strong message to the European Parliament and the national governments, and will help raise awareness of IPF among the EU institutions.
 
Congratulations to the EU-Idiopathic Pulmonary Fibrosis and Related Diseases Federation (EU-IPFF), the healthcare professionals on EU-IPFF scientific advisory board and all the national patient organisations who worked so hard to ensure the success of the Written Declaration 26/2016 on idiopathic pulmonary fibrosis.

Thank you to all the MEPs from Ireland and across the EU who supported the Written Declaration 26/2016 on idiopathic pulmonary fibrosis. We are so greateful for your support!

 

Thank you to the McSkean Family, Castleshane, Co Monaghan 

On 14th May, Patrick and Teresa McSkeane from Castleshane, Co Monaghan were the guests of honour at a party organised by their children to celebrate their 40th wedding anniversary. The party was held in Club Derrynoose and a great night of fun was had by all. Patrick, Teresa and their children Kevin, Patrick Jnr., Malachy, Barry, Eugene and Annie Frances kindly asked for donations to ILFA in lieu of gifts and the fantastic sum of €1600 was raised thanks to the wonderful generosity of their family and friends.

Eddie and Nicola Cassidy from ILFA travelled to Castleblaney on 12th July to meet the McSkeane family for a cheque presentation and to pass on ILFA's appreciation for their kindness.

 

Brainstorming Session

Huge thanks to everyone who attended ILFA's Brainstorming Session on Saturday 18th June.

ILFA invited a small number of patients, carers, healthcare professionals and representatives from pharmaceutical and oxygen companies to attend a 'Word Café' style meeting' We discussed ideas on how to progress the 6 key areas described in the National Patient Charter.

The event was a great success and we are grateful to everyone for their valuable contributions.

 

 

Mini-marathon 2016 - Thank you ladies !

Thank you to everyone who took part in the VHI Women's Mini-Marathon on Monday 6th June and helped raise awareness and funds for ILFA.

This year, team ILFA was made up of over 40 ladies from across the country. 

Some of the team met outside The Mespil Hotel for a group photo before making their way to the start line. After the race, some team members gathered for refreshments in the Duke pub.

We hope everyone enjoyed the day!

 

 

ILFA Home Exercise DVD for Lung Fibrosis Patients

ILFA has developed a Home Exercise DVD for Lung Fibrosis Patients in collaborration with the physiotherapy department at the Mater Misericordiae Hospital, Dublin.

The DVD describes different stretches and exercises to help keep you mobile, strong and fit and also covers breathing techniques, patient experiences and words of encouragement.

Please contact ILFA by calling 086 871 5264 or emailing info@ilfa.ie to order your copy.

 

  

 

Celebrating International Nurses Day!

ILFA would like to pay special tribute to the nurses who are making a difference to the lives of lung fibrosis patients in Ireland, Europe and across the world. We acknowledge the great compassion, kindness and dedication of all nurses and their role in delivering the highest standards of patient care.

International Nurses Day is celebrated every year on 12th May, the anniversary of Florence Nightingale’s birth

 

ILFA Spring 2016 Newsletter  

The ILFA Spring 2016 Newsletter is now available to read online.

http://www.ilfa.ie/…/ILFA_Newsletter_Spring_2016.FINAL-lore…

Please contact ILFA if you would like to be added to or removed from our mailing list.

Tel 086 871 5264 or email info@ilfa.ie

 

Patient breathlessness survey

ILFA would like to find out more about your personal experiences of breathlessness and how you manage your symptoms. We would be very grateful if you would fill out the questionnaire at the link below, by the 30th April 2016. The survey is anonymous and there are no right or wrong answers.

Please call ILFA on 086 871 5264 if you have any queries about the survey.

Thank you for sharing your experiences.

https://www.surveymonkey.com/r/YV3ZRYD

 

ILFA Patient Information Day

Thanks to everyone who attended the ILFA Patient Information Day on 9th April in The Anner Hotel, Thurles, Co Tipperary. Our speakers  Dr Emmet McGrath, respiratory consultant and Lindsay Brown, respiratory nurse specialist from St Vincent's University Hospital, and Petra Grehan, respiratory physiotherapist and Ciaran Heatley, respiratory physiologist from the Mater Misericordiae University Hospital gave excellent presentations. 



'Have the chat' social media campaign

Please read, like and share this message from Michelle O'Sullivan who contacted ILFA via our facebook page. What a great idea! Let's get behind Michelle and her "‪#‎havethechat‬" campaign.

My father suffers from IPF and following an infection before Christmas he deteriorated faster than we thought he would - he had been ill but was able to work up... until this point - he is now on 24 hour oxygen. He has been assessed for transplant And we are so happy that he was placed on the lung transplant list two weeks ago. As a family we wanted to do something and we are trying to get a social media campaign going to coincide with organ donation week in April called ‪#‎havethechat‬. It's a campaign to raise awareness on how important it is to relay to your next of kin, family and friends your wishes about donating your organs . We would love to get this campaign trending and get people talking about the importance of organ donation . If you can please like and share the Facebook page and nominate three of your friends to #havethechat. Feel free to share any stories, pictures or videos about your life before or after transplant. Thank you.

https://www.facebook.com/Have-The-Chat-476463942539041/?hc_location=ufi

 

 

 

European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF)

Congratulations to everyone involved in the establishment of the EU-Idiopathic Pulmonary Fibrosis and Related Diseases Foundation (EU-IPFF) over the last few years. 

The first General Assembly of the EU-IPFF took place on February 22nd and ILFA was represented by Liam Galvin. Liam was elected to the Board of the EU-IPFF and was also appointed as Secretary.

We wish Liam, the Board and all the patient groups every success with their work on behalf of IPF patients in Europe.
The photo shows all the signatories celebrating and signing the Statutes of the EU-IPFF.

  

 

New support group in the southeast

Laura and her sister Ruth are hoping to set up an IPF support group in Gorey, County Wexford, if there is local interest.

Laura contacted us to say "Our dad Robert was diagnosed last summer and we have noticed that between hospital appointments, you can be left feeling adrift. With that in mind, we thought a group in the south east might be the answer. We would hope to meet once a month and start by the end of April."

If you are interested, please call Laura on 087 285 4509 or Ruth on 085 164 9499

 
 

European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF)

The 1st General Assembly of the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) will take place in Brussels this weekend. Liam Galvin, ILFA committee member, will represent ILFA at this important event.
 
The EU-IPFF is made up of patient organisations, healthcare professionals and medical experts from 11 countries and aims to raise awareness of IPF.
 
Please show your support by signing the EU IPF Patient Charter.

 

General election 2016

The Irish Lung Fibrosis Association is registered with the Register of Lobbying, maintained by the Standards in Public Office Commission. As election time approaches, we would like you to speak with your local political representatives and ask them to consider our needs and requests for the next government.

ILFA is calling on politicians and public representatives to support:

  • fair and fast medical card approval procedures. IPF is a devastating and progressive disease and places a huge financial burden on patients and families as their medical care needs increase.
  • timely access to new medications to treat IPF.

  • access to adequate oxygen supplies. Imagine being afraid to leave your house because you are expected to survive on just 6 cylinders of oxygen per month; this is the number of cylinders that administrators in some HSE areas decide a patient can have, even when their prescription states a greater quantity. This rationing needs to stop. Using portable oxygen cylinders, allows patients to attend hospital appointments, go shopping, and attend pulmonary rehabilitation classes or support group meetings. Patients should not have to ration their oxygen supply or limit their participation in daily activities out of fear.

  • the introduction of a soft-opt out organ donation system to increase the number of potential organ donors and life saving transplant operations that can take place. This was included in the current programme for government but was not delivered.

  • more health funding for resources to support patients accessing primary care, community care, palliative care services and acute hospitals. Patients who can access their primary care support network in a timely manner may be able to avoid stressful and costly hospital admissions.


Good news!

On 27th January, the National Institute for Health and Care Excellence (NICE) in the United Kingdom issued guidance recommending Nintedanib as a treatment option for Idiopathic Pulmonary Fibrosis. 

The NICE committee peformed a detailed analysis of the clinical benefits, side effects and cost effectiveness of the drug to reach their decision. According to the NICE guidance, Nintedanib can be prescribed for patients in the UK whose lung function tests show a forced vital capacity (FVC) between 50-80% of their predicted value.

The full guidance from NICE was published in "The Lancet", a leading medical journal.

 

The ILFA Denise Cassidy Memorial Prize

   
   

In 2015, ILFA asked our members to nominate a healthcare worker for a special prize, dedicated to the memory of Denise Cassidy, in recognition of an act of kindness shown to a patient with IPF.

ILFA is pleased to announce that Katie Barry, staff nurse from Cork University Hospital was the worthy winner of the inaugural Denise Cassidy Memorial Prize. Katie was nominated by Vikki Jolly for her outstanding kindness, dedication and compassion wh...en caring for Vikki's father, Martin Erangey. Katie looked after Martin and his family with great personal care, attention and support. Vikki told us "We have never seen the commitment to patient care and compassion shown by Katie. Her care allowed my father to pass with dignity and love".

Katie and her family were invited to Dublin in November to attend the ILFA Patient Information Day and receive her award. Katie was presented with a specially commissioned piece of Dublin crystal and a certificate for Excellence in Patient Care. Katie said "I really enjoyed the patient information day. It was wonderful to be a part of it, to be around such strong, amazing and inspirational people was such an honour. It's such an honour to have been nominated by a lovely family, let alone me being given the award. Denise must have been truly inspirational, and to receive an award with her name on it, is such an amazing gift. To say that I am grateful and honoured is an understatement. Words cannot express how thankful and deeply touched I am. The certificate and award have pride of place in my home. I'm still looking at it with disbelief. I love my job and you never expect to receive anything for the work you do, but to be honoured in such a way is truly amazing and something I will always be proud of and grateful for."

Also honoured with a certificate for Excellence in Patient Care were Irene Byrne (Senior physiotherapist with the Heart and Lung Transplant Unit, Mater Misericordiae University Hospital) and the staff of the Heart and Lung Transplant Unit, Mater Misericordiae University Hospital) represented by nurse Sheena Minogue. Lorna Murphy (previously of the Mater Hospital and ILFA) was unable to attend the event but was subsequently presented with... her award at the Irish Thoracic Society Meeting.

Warmest congratulations to all the winners.

 

Coffee morning fundraiser    

Congratulations and thanks to Siobhan Ryan (Respiratory and Acute Medical Clinical Nurse Manager) for organising an impressive and irresistible cake sale in the Mater Private Hospital in December in aid of ILFA. Siobhan's enthusiasm, hard work and baking talents paid off as she raised the fantastic sum of €1412. Thank you to all the staff, patients and hospital visitors who supported the cake sale so generously.

The photo shows Siobhan Ryan and Jimmy Rushe at the cake sale in December and Terence Moran (ILFA Chairman) with Professor Jim Egan (Respiratory Consultant at the Mater University Hospital), Kathryn Holly (Chief Operations Manager of the Mater Private Hospital) andSiobhan Ryan.

 

 

ILFA Annual Christmas Swim

- A report from Nicky Goodbody

Although it was unseasonally warm on St Stephen's Day 2015, there was a higher than usual tide and strong swell, so only the very brave ventured into the water. They included Niall Deegan and Matt Regan, who put the rest of us to shame by diving in three times! Honora and Colin Ireland, who both swam, are to be thanked especially for their help with the organisation and the afters. We had a good turn-out of loyal supporters and are especially grateful to Giles Bailey for shaking the ILFA bucket with such successful results. We all adjourned afterwards to a local hostelry for warming mulled wine and post-Christmas relaxation. In spite of the weather, a great time was had by all.

 

Well done and thank you to all the brave swimmers and their supporters.

 

 

 

 

 

ILFA Home Exercise DVD for Lung Fibrosis Patients

ILFA has developed a Home Exercise DVD for Lung Fibrosis Patients in collaborration with the physiotherapy department at the Mater Misericordiae Hospital, Dublin.

The DVD describes different stretches and exercises to help keep you mobile, strong and fit and also covers breathing techniques, patient experiences and words of encouragement.

Please contact ILFA by calling 086 871 5264 or emailing info@ilfa.ie to order your copy.

 

 

 

 A record year for lung transplants

Congratulations to all the team at the National Heart and Lung Transplant Unit at the Mater Misericordiae University Hospital in Dublin for performing a record number of lung transplants in 2015.

Figures from the National Organ Donation and Transplantation Office revealed that 36 lung transplants, 16 heart transplants, 61 liver transplants and 120 kidney transplants were performed in 2015 thanks to the generosity of 81 organ donors and their families.

 

Happy New Year!

What a year we have had - it was a busy year but a memorable one because of our achievements. Our amazing fundraisers worked hard and inventively to help raise awareness and valuable funds to support our work.

In 2015, ILFA produced;...
• the National Patient Charter for IPF
• two patient information leaflets; "What is pulmonary fibrosis?" and "Oxygen for Idiopathic Pulmonary Fibrosis"
• an Exercise DVD for Lung Fibrosis Patients
• a film on the National Patient Charter for IPF
• "Love Your Lungs" film featuring Dolores Williams, IPF patient

We also produced 3 newsletters and held patient information days in Athlone and Dublin. ILFA presented research at the European Respiratory Society (ERS) Congress in Amsterdam and the Irish Thoracic Society Meeting in Cork and Matt Cullen, IPF patient, was invited to speak at the ERS Congress.

Our facebook followers have grown in numbers and this has helped increase our ' weekly reach' and raise greater awareness.

Your support means everything to us and helps us achieve our aims. Thank you and happy new year!

 

Happy Christmas

Happy Christmas from everyone at ILFA!  Thank you for all your support and wonderful fundraising activities throughout 2015. We wish all our members and suppporters in Ireland, Europe and all over the world a very happy Christmas and a peaceful and healthy New Year.

 

 

ILFA Newsletter Winter 2015

The ILFA Winter 2015 Newsletter is now available.

If you would like to be added to our mailing list please email info@ilfa.ie or call 086 871 5264

 

 

ILFA Christmas cards

Please call 086 871 5264 or email info@ilfa.ie to order your 2015 ILFA Christmas cards.

The cards are printed in Ireland and all proceeds go to ILFA.

One pack with 10 cards of 5 assorted designs costs €6 and 2 packs cost €10.

 

 

What to do in case of a power cut

It is important to be prepared and know what to do in case there is a loss of electricity. You should talk to your family so they are prepared too and can help you. If there is a  power cut, try not to panic as this could make your breathing worse.

If there is a power cut:
1. Transfer from your home concentrator to your back-up oxygen cylinder.
2. Call the Electric Ireland Network customer care centre on 1850 372 999. The sooner you contact them, the sooner they can respond.

If the power cut is going to last a long time, you may need to go with your oxygen concentrator to another house that still has an electricity supply or to a hospital that can give you oxygen.

http://www.ilfa.ie/docs/ILFA.OxygenandIPF.pdf

 

Love Your Lungs campaign 2015

Congratulations to Dolores Williams for taking part in a video to highlight the importance of lung health. You can see how Dolores' positive attitude helps her manage her IPF in the video below

 

Dolores found help in dealing with her illness by contacting ILFA. If you or someone you know is affected by Idiopathic Pulmonary Fibrosis (IPF), please contact ILFA by calling 086 871 5264 or by using this form http://www.ilfa.ie/contact.asp

 

 

Thank you

Special thanks to the Tullamore Ladies Golf Club for holding a raffle in aid of ILFA. They raised the fanstatic sum of €650.

The ladies in the photo are (from left to right) Joan Keegan - Social Secretary, Kathleen Moylan - hamper winner, Mary Guiney - ILFA representative, and Helen Egan - Lady Captain Tullamore Golf Club.

Warmest thanks to everyone who supported the raffle.

 

 

 

Charity Hero of the Year Award

Congratulations to Matt Cullen (IPF patient) from Dublin who has been nominated for a 'Better Together Charity Hero of the Year Award'. Now Matt needs your help to get crucial votes and in doing so help raise awareness of lung fibrosis. Please vote for Matt every day from now till 4tth December. Please share this post and ask your friends to also vote.

http://2015.bettertogether.ie/charity-hero/matt-cullen

In January, Matt's 2015 new year resolution was to say "YES" to everything he could and what a year he has had ! Here are some of Matt's 2015 achievements to date .... and its still only November !

• January and February - Matt was busy painting!
• March - Matt held his first solo art exhibition in Filmbase, Temple Bar, Dublin and donated 20% of proceeds to ILFA. Matt was interviewed on radio and his story appeared in the national media.
• May - Matt spoke at the ILFA Patient Information Day in Athlone in May and told the audience how he manages his pulmonary fibrosis through