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 support group 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

 

Annual ILFA Christmas Swim

The ILFA Christmas Swim will take place on Thursday 27th December at 1pm sharp at Sandycove pier, Co Dublin. This year's swim is dedicated to the memory of Honóra Ní Chríogáin, co-founder of ILFA and organiser of the swim since 2002.

Refreshments will be served at Fitzgerald's Pub afterwards at 1.30pm.

Please contact ILFA on 086 871 5264 (or email info@ilfa.ie) if you would like to take part and fundraise for ILFA. 

 

 

ILFA Christmas cards are now available

Please consider buying some Christmas cards from the Irish Lung Fibrosis Association to help raise awareness of Lung Fibrosis this festive season. 

Each pack has 10 cards - 2 cards each of 5 designs.

One pack costs €6 and two packs cost €10. 

Cards can be ordered by calling 086 871 5264 or emailing info@ilfa.ie

 

 

New support group in Ennis, Clare

On 7th November, 2018, Carmel McInerney (respiratory nurse specialist at Ennis Hospital) and members of the respiratory teams at Ennis Hospital and Limerick University Hospital held a valuable information evening on Pulmonary Fibrosis for patients and family members.

The aim of the meeting was to see if there was interest in setting up a local support group for patients in county Clare.

As a result, ILFA Ireland is pleased to announce the establishment of the Clare Pulmonary Fibrosis Support Group.

Please contact Michael on 087 637 4068 if you are interested in attending the new support group in Ennis.

 

'ILFA 15' receives a Commendation Award at the Irish Healthcare Awards 2018

The Irish Lung Fibrosis Association received a Commendation Award at the 2018 Irish Healthcare Awards on October 17th 2018 for our 'ILFA 15' special edition magazine. ILFA 15 was produced to celebrate ILFA's 15th anniversary in 2017 and features articles written by patients, family members, fundraisers, healthcare professionals and supporters describing their involvement with ILFA and the advances in lung fibrosis care since 2002.

The Patient Organisation Project of the Year award recognises improvements in patient care, innovation and collaboration and we are thrilled that  'ILFA 15' was short-listed in this prestigious and competitive category.

Pictured are Edna Powell (lung transplant recipient), Nicola Cassidy (ILFA), Gemma O'Dowd (ILFA) and Michael Geoghegan (lung transplant recipient) who represented ILFA at the event.

 

'ILFA 15' Special Edition Magazine

In 2017, ILFA celebrated our 15th anniversary.

The production of the 'ILFA 15' magazine was a major project for 2017 and celebrates the advances in IPF care since 2002, when ILFA Ireland was founded. The magazine has articles written by patients, doctors, nurses, allied healthcare professionals, clergy, patrons, professional respiratory bodies including the Irish Thoracic Society and The European Lung Foundation, family members, fundraisers and support group members.

The end result is superb and a credit to all the writers involved. ILFA 15 was offically launched during IPF World Week in 2017. 

Cllick here to read the online version of the ILFA 15 magazine.

 

 

ILFA representatives visit Our Lady of Lourdes Hospital, Drogheda

Sarah Nolan, respiratory physiotherapist at Our Lady of Lourdes Hospital in Drogheda, kindly invited ILFA representatives to attend the respiratory team's multi-disciplinary meeting on Tuesday 30th October, 2018.

Nicola Cassidy (ILFA Director) gave an overview of ILFA's work to promote awareness of pulmonary fibrosis and support patients and families, and Matt Cullen (IPF patient and Dublin Support group leader) shared his personal perspectives on living well with the condition.


Nicola (2nd left) and Matt (3rd right) are pictured with Sarah (centre) and members of the medical team. 

 

Tip of the week

Relax tense muscle to improve breathlessness
When you become short of breath, the muscles in your shoulders, neck and chest can become tense and use up a lot of energy, making your breathless worse.
When you become short of breath, stop what you are doing and find a comfortable position that helps you to take control and breathe easier. Concentrate on relaxing the parts of your body that are tense, for example, unclench your jaw, relax your neck, and let your shoulders relax and drop down.

 
Click here to read more tips from 2018. 
 
 

Inspirational Quote of the Week

"Over every mountain there is a path, although it may not be seen from the valley.” James Rogers

Click here to read more inspirational quotes featured in 2018. 

 

Irish Thoracic Society Position Statement on the Management of Idiopathic Pulmonary Fibrosis

Please click here to read the 2018 Position Statement from the Irish Thoracic Society (ITS) on the Management of IPF that was launched on 31st August 2018 at the Royal College of Physicians of Ireland. 

The ITS Position Statement;

  • provides guidance to healthcare professionals on the optimal pathways for the diagnosis and management for IPF
  • is aimed at policy and decision makers in the Health Service Executive (HSE) and outlines the resources necessary to provide fair and equal access to standards of care needed for all IPF patients
  • will empower patients and families to look for the best care
Pictured at the launch of the ITS Position Statement are Professor Ross Morgan (President of the ITS), Catherine Byrne, TD, Minister of State and Professor Anthony O’Regan.

 

 

Patient Information Day

The next ILFA Patient Information Day will take place on Saturday 20th October at the Crowne Plaza Hotel, Northwood, Santry, Dublin from 10am until 1pm. We hope you can join us to learn more about pulmonary fibrosis from experts in the field. All are welcome.

Our speakers will include;

  • Professor Jim Egan, Respiratory Consultant at the Mater Hospital

  • Dr Eoin Hunt, Respiratory Registrar at the Mater Hospital

  • Grainne Casey, Respiratory Physiotherapist at the Mater Hospital

  • Zita Lawlor, Transplant Co-ordinator at the Mater Hospital

  • Lindsay Brown, Respiratory Nurse Specialist at St. Vincent's Hospital

    Please note that some of the speakers are different to that advertised in ILFA's Autumn Newsletter due to unforeseen circumstances. We are grateful to the new speakers for agreeing to take part at short notice.

Please contact Gemma on 086 871 5264 or email info@ilfa.ie to register to attend this free event.

 

ILFA Ecumenical Service of Prayer and Reflection   

The annual ILFA Service of Prayer and Reflection will take place on Saturday 6th October at Brighton Road, Methodist Church, Rathgar, Dublin at 3pm. On street parking is available on Brighton Road. There is limited parking at the church for patients with mobility challenges. 

The ecumenical service will be celebrated by Reverend Vanessa Wyse Jackson (Minister at Rathgar Methodist Church), the Reverend Canon Brian McKay (Prior of Terenure College), and the Reverend Canon Charles Mullen (Dean's Vicar at St Patrick's Cathedral).

All are welcome to attend this special service.

 

 

Raising Awareness of Lung Fibrosis

A great article entitled "Living with lung fibrosis; therapies and hoping for a transplant" appeared in print and online in the Irish Times on Tuesday 9th October.

Well done to Edna Powell and Evelyn Cooper for sharing their stories of lung fibrosis and mentioning the support from the Irish Lung Fibrosis Association. 

Click here to read the article

 

Press Release from the Irish Donor Network

As TDs Return from the Summer Recess, Irish Donor Network Calls for Swift Passing of Legislation for Soft Opt-out Organ Donation

Date of issue: Monday September 17, 2018
As TDs get set to return from the summer recess, and RTE airs a documentary on Orla Tinsley’s transplant, the Irish Donor Network has today renewed its call on Government for the introduction of presumed consent organ donation legislation – also known as soft opt-out organ donation – to improve transplant rates in Ireland.

The call comes against a backdrop of most recent figures showing 587 people waiting for potentially life-changing organ transplants in Ireland in 2017. Ireland lies in 15th place out of 28 European Union countries when it comes to organ donation, despite very high levels of public support.

International evidence has confirmed the positive impact of opt-out consent on deceased organ donor rates. Over a three-year period, after making the change to an opt-out system, Belgium saw its rate of organ donation increase by 100 per cent. The recent experience in Wales with soft opt-out has also been very positive. The countries with the best rates of organ donation in Europe have some form of soft opt-out system, combined with sufficient infrastructure.

Philip Watt, Chief Executive, Cystic Fibrosis Ireland and Chair of the Irish Donor Network comments:
“The resumption of Dáil Éireann this Tuesday coincides with the broadcasting by RTÉ of a documentary on inspirational cystic fibrosis campaigner, Orla Tinsley, who underwent a double lung transplant in December of last year. The documentary once again brings into sharp focus the importance of organ transplantation and the transformation it makes to people’s lives.

“Introducing a soft opt-out organ donor consent system will undoubtedly save more lives and help to ensure our organ donor system is fit for the 21st century.

“Ireland is one of the last countries in Europe, along with Scotland, Northern Ireland and England, not to have presumed consent when it comes to organ donation. The number of people awaiting life-saving organ transplants in Ireland is more than double the operations carried out.

“Bringing in this new legislation will also bridge the gap between people’s intentions and their behaviour. 85 per cent of people in Ireland are willing to donate organs but only one-third of us carry an organ donor card and many of us do not inform our next of kin of our intentions to donate or otherwise.  

“Organ donation will always be a ‘gift of life’. With this proposed new system, next of kin will continue to be consulted so no family will be forced to donate the organs of a loved one should they not wish to do so. There will also be an online register for opting out of organ donation.

“IDN is today calling on public representatives of all persuasions to get behind this legislation and to ensure its swift passage through the Houses of the Oireachtas. It will prove an enduring legacy and one that will offer the prospect of a new lease of life for more of this country’s citizens than ever before.”

ENDS

For more information, Philip Watt, Chief Executive, Cystic Fibrosis Ireland and Chairperson Irish Donor Network, telephone.: 01 4962433 / 087 6370557 or email pwatt@cfireland.ie

Notes to Editor.

About the Irish Donor Network (IDN)

The IDN represents the following patient groups

  • Alpha One (Antitrypsin) Foundation: The Alpha One Foundation was founded in 2001 to raise awareness, increase diagnosis, promote research and improve the treatment of Antitrypsin Deficiency (Alpha-1). www.alpha1.ie
  • Cystic Fibrosis Ireland (CFI): CFI was founded in 1963 to support people and families living with Cystic Fibrosis (CF). Many people with CF will need a double lung transplant because of the damage caused to lungs by CF. www.cfiireland.ie
  • Chronic Obstructive Pulmonary Disease Support Ireland (COPDSI): COPDSI provides support for people with COPD in Ireland. www.copd.ie
  • Cystinosis Ireland: Cystinosis is a rare, degenerative, inherited disease which frequently requires the need for kidney and sometimes other organ transplants. www.cystinosis.ie
  • The Irish Heart and Lung Transplant Association (IHLTA): The IHLTA is a voluntary organisation which includes heart, lung(s), heart and lung transplant recipients, family and supporters. www.ihlta.com
  • The Irish Lung Fibrosis Association (ILFA): The ILFA was set up in 2002 to support patients and families living with Idiopathic pulmonary fibrosis (IPF). www.ilfa.ie
  • The Pulmonary Hypertension Association Ireland: PHA Ireland was established in 2005 to raise the profile of Pulmonary Hypertension (PH) and to support patients who are diagnosed and living with this disease in Ireland. Persons with PH may require lifesaving lung and liver transplants.

 

 

The ILFA Autumn 2018 Newsletter is now available online


Click here to read the latest ILFA newsletter. 

 

If you would like to join our mailing list and receive the ILFA newsletters by post, please call ILFA on 086 871 5264 or register online here.

 

 

 

Irish Thoracic Society Position Statement on the Management of Idiopathic Pulmonary Fibrosis


Please click here to read the 2018 Position Statement from the Irish Thoracic Society (ITS) on the Management of IPF that was launched on 31st August 2018 at the Royal College of Physicians of Ireland. 

The ITS Position Statement;

  • provides guidance to healthcare professionals on the optimal pathways for the diagnosis and management for IPF
  • is aimed at policy and decision makers in the Health Service Executive (HSE) and outlines the resources necessary to provide fair and equal access to standards of care needed for all IPF patients
  • will empower patients and families to look for the best care

The ITS has called for;

1)    adequate resourcing of the centres of expertise in lung fibrosis across Ireland to ensure all patients receive an early and accurate diagnosis with treatment started within 16-weeks, and the same high standards of care

2)    a specific HSE National Clinical Programme to facilitate a standard pathway of care to ensure IPF receives the critical focus it requires at all levels across the health service.

The development of the ITS Position Statement was a major collaborative effort facilitated by the ITS and involving a wide range of disciplines including; doctors, surgeons, pathologists, radiologists, nurses, physiotherapists and patient representatives. Nicola Cassidy, Director of the Irish Lung Fibrosis Association, and Matt Cullen, patient advocate and leader of the Dublin Pulmonary Fibrosis Support Group, were involved in the project.

Pleae click here to read the Press Release on the ITS Position Statement. 

 

Educational Video for General Practitioners

In 2017, the Irish Lung Fibrosis Association (ILFA) funded an educational video on Idiopathic Pulmonary Fibrosis (IPF) for General Practitioners. IPF is classified as a rare disease and can be difficult to diagnose. The video aims to raise awareness of the condition among primary care doctors.
The video is hosted on the GP website; www.gpbuddy.ie.
ILFA is grateful to Dr Emmet McGrath, Respiratory Consultant at St Vincent's University Hospital, Dublin for filming the video tutorial.

 

The 2018 Fergus Goodbody Memorial Lecture

ILFA was set up in memory of Fergus Goodbody in 2002 to facilitate research, education and support for Idiopathic Pulmonary Fibrosis (IPF). Every two years since 2010, ILFA has invited an international leader in IPF to deliver an educational lecture to healthcare professionals in Ireland. The 2018 Fergus Goodbody Memorial Lecture on IPF took place on 14th March in collaboration with the Royal College of Physicians of Ireland (RCPI). 170 healthcare professionals registered to attend, making this our largest educational event to date. Dr Diarmuid O'Shea, Registrar of the RCPI, welcomed the speakers and audience to the Masterclass in Respiratory Medicine and was especially delighted to welcome Nicky Goodbody to the event.

Professor Toby Maher from the Royal Brompton Hospital, London spoke on 'Developments in IPF' and Anne Marie Russell, Clinical Doctoral Research Fellow at the National Heart and Lung Institute at Imperial College London spoke on 'Palliative care and end of life management for IPF patients.’  Professor Edward McKone, St Vincent's University Hospital, spoke about Cystic Fibrosis, and Professor Anthony O'Regan, University College Hospital Galway, gave a lecture entitled 'Alphabet soup' and summarised different types of Interstitial Lung Disease.

Please click here to read more. 

Professor Maher's presentation can be viewed here. 

   

 

Anne-Marie Russell's presentation can be viewed here. 

 

Professor O'Regan's presentation can be viewed here.

    

 

Educational Bursaries for Respiratory Nurses and Allied Healthcare Professionals to attend the ILD-INN conference

ILFA is delighted to announce that due to the high calibre of applications received, we have decided to award 10 educational bursaries to healthcare professionals to attend the Interstitial Lung Disease Inter-disciplinary Network (ILD-INN) conference in Birmingham on 7th and 8th of October. 

 
The recipients of the ILFA bursaries are;
  • Patricia Davis (Community Healthcare Organisation Area 6)
  • Lisa Glynn (Tallaght University Hospital)
  • Elaine Craven (Connolly Hospital, Blanchardstown)
  • Carol Doherty (Letterkenny University Hospital)
  • Breige Leonard (South West Acute Hospital Hospital, Enniskillen)
  • Deirdre O'Flaherty (Beaumont Hospital)
  • Elaine Cribbin (Tallaght University Hospital)
  • Irene Byrne (Mater University Hospital)
  • Carita Bramhill (St Vincent's University Hospital)
  • Grainne Coffey (University Hospital Kerry). 
Well done to all the recipients - we hope you will enjoy the conference! 
 
For more information on the conference please visit www.ild-inn.org.uk
 
 

ILFA Exercise DVD

The ILFA Exercise DVD for lung fibrosis patients is available to order now. Contact ILFA on 086 871 5264 or email info@ilfa.ie

 

 

 

General Data Protection Regulations (GDPR) and ILFA

Recently ILFA contacted everyone on our mailing list to request consent for your personal details (name, address, email, telephone number) to remain on the ILFA mailing list. This is necessary to comply with the new General Data Protection Regulations (GDPR).
 
Thank you to everyone who has responded so far. If you have not replied yet but wish to remain on our mailing list please;
  • Register on-line at https://www.ilfa.ie/register.asp  or 
  • Call Gemma on 086 871 5264
If we have not received your consent by Friday 20th July, your details will be removed from the ILFA database and you will not receive further correspondence from ILFA. 
 
You can choose to join or be removed from the ILFA mailing list at any time. 
 

 

 

VHI Women's Mini Marathon 2018

The Vhi Women's Mini Marathon took place on Sunday 3rd June at 2pm in Dublin. 

Thank you to all the ladies on Team ILFA for your support. 

 

 

 

ILFA 15 - special edition magazine celebrating 15 years

In 2017, ILFA reached our 15th anniversary! 

To celebrate this important milestone we produced ILFA 15 which included articles from patients, doctors, nurses, allied healthcare professionals, patrons, professional respiratory bodies including the Irish Thoracic Society and The European Lung Foundation, volunteers, family members, and fundraisers. 

Click here to read ILFA 15 online.

We hope you will enjoy reading ILFA 15.

 

 

 

Spring Newsletter

The Spring Newsletter is now available online. We hope you enjoy reading about our activities. 

If you would like to be added to ILFA's mailing list and receive our newsletter by post, please call 086 871 5264 or email info@ilfa.ie

Click here to read the ILFA Newsletter

 

ILFA Patient Information Day October 2018

ILFA is pleased to announce the details of our Autumn Patient Information Day!

It will take place on Saturday 20th October in Dublin.

We'll keep you posted with updates on the event over the coming months.

 

Visit to Aras an Uachtarain

Thank you to President Michael D Higgins and Sabina Higgins for inviting members of ILFA to a special St Patrick's Day reception at Aras an Uachtarain to honour patient organisations, healthcare professionals, families and individuals who have helped promote organ donation and transplantation. It was an honour, a privilege and a wonderful treat to meet the President and Sabina on Ireland's national day.

The ILFA delegates who attended the event were Eddie Cassidy (ILFA Chairman), Nicola Cassidy and Lynn Fox (ILFA committee members), and our special guests; Ann and Michael Kennedy, Pam and Liam Martin, and Edna and Ken Powell who have all fundraised for ILFA and whose names were drawn from a hat.

The President gave a beautiful and heartfelt speech highlighting the wonderful generosity of organ donors and their families at a time of great personal tragedy, and the wonderful gift of life they bestow to those in need of life saving transplants. He also encouraged everyone to have a conversation with their next of kin and let them know about their wishes to be an organ donor. Professor Jim Egan (Organ Donation and Transplant Ireland) also gave a speech acknowledging the great sacrifice of donors in order to give renewed life to transplant recipients. 

It was wonderful to see all those involved in organ donation and transplantation from across Ireland represented at the reception. We were treated to great music, song and dance, lovely refreshments, and the opportunity to meet friends and make new acquaintances. What an honour and a privilege to be so warmly welcomed by President Michael D Higgins and Sabina to their beautiful home. Mile Buiochas!

Image may contain: 5 people, people smiling, people standing and suit

 

 

The Fergus Goodbody Memorial Lecture

The 2018 Fergus Goodbody Memorial Lecture on Idiopathic Pulmonary Fibrosis took place on 14th March 2018 in collaboration with the Royal College of Physicians of Ireland, Kildare Street, Dublin. We are delighted to report that 170 healthcare professionals registered to attend the event.

Dr Diarmuid O'Shea, Registrar of the College, chaired the event, welcomed the audience and introduced the prestigious guest speakers who are leaders in respiratory medicine.
- Professor Toby Maher from the Royal Brompton Hospital, London spoke on 'Developments in IPF'.
- Anne-Marie Russell, Clinical Doctoral Research Fellow at the National Heart and Lung Institute at Imperial College London spoke on 'Palliative care and end of life management for IPF patients'.
- Professor Edward McKone of St Vincent's University Hospital gave an update on the treatment of Cystic Fibrosis.
- Professor Anthony O'Regan, University College Hospital Galway delivered a lecture entitled 'Alphabet soup' and gave a summary of some of the different types of Interstitial Lung Diseases.

This important educational event for healthcare professionals was a great success thanks to our superb speakers. Thanks to Boehringer Ingelheim Ltd. for supporting this educational activity.

Pictured are Eddie Cassidy (ILFA Chairman), Nicky Goodbody (ILFA Director and co-founder), Professor Toby Maher, Ms Anne-Marie Russell, Professor Anthony O'Regan, Professor Jim Egan and Professor Edward McKone.

 

ILFA Patient Information Day, October 2017

 

 

 

 

 

 

Irish Donor Network Calls for the Introduction of an Opt-Out Organ Donation System

The Irish Donor Network (IDN) represents a group of seven national patient organisations; Alpha One Foundation Ireland, Cystic Fibrosis Ireland, COPD Support Ireland, Cystinosis Ireland, The Irish Heart & Lung Transplant Association, the Pulmonary Hypertension Association of Ireland and the Irish Lung Fibrosis Association, who work to promote organ donation and transplantation in Ireland.

The IDN prepared a joint submission to the Public Consultation on the Human Tissue Bill 2017 (incorporating organ donation) to confirm its support for Government’s introduction of soft opt-out consent to organ donation. 

Click here to read the IDN's submission to the Public Consultatiion on the Human Tissue Bill 2017.

Click here to read the IDN's information leaflet

ILFA also made a separate submission to the Public Consultation on the Human Tissue Bill.

The Department of Health's Report arising from the Public Consultation can be viewed here.

 

The Denise Cassidy Memorial Prize 2017

"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.

The Denise Cassidy Memorial Award recognises and celebrates an act of kindness shown by a healthcare worker to a lung fibrosis patient. In 2017, ILFA members were invited to nominate a person who showed them or their loved one a special kindness. ILFA was delighted to receive so many nominations and learn about the great work of our healthcare staff. Thank you to everyone who nominated their healthcare hero. 


Olivia Mulvaney, staff nurse from Cavan General Hospital, was chosen as the worthy winner of the 2017 Denise Cassidy Memorial Prize. Olivia was presented with a specially commissioned piece of Dublin Crystal and a framed certificate for Excellence in Patient Care by Eddie Cassidy (ILFA Chairman) in Dublin on Monday 29th January.

Everyone nominated for the award also received a certificate for Excellent in Patient Care.  

The photo shows Eddie Cassidy with Olivia Mulvaney and her husband Tommy. 

Click here to read more.

 

Happy New Year from ILFA

Thank you for your support and goodwill for our charity throughout 2017. We are looking forward to carrying on our advocacy work in 2018, to strive to raise awareness about IPF and to continue to support patients and families affected by this condition. The ILFA Committee would like to wish you and your family a happy, peaceful and healthy new year.

 

2017 - A Year in Review

2017 was a year of many different emotions for everyone at ILFA. Our esteemed Chairman of 15 years, Terence Moran, passed away suddenly in August and we continue to experience an enormous sense of loss. Terence had guided us expertly from 2002 to 2017 and was excited to mark ILFA Ireland's 15th year anniversary with the production of our special edition magazine. The 'ILFA 15' magazine was launched during IPF World and celebrates the advances in IPF care since ILFA was founded. The magazine is dedicated to Terence Moran's memory.

2017 was an incredibly busy year for ILFA. Thank you to all of you for your support. We are hugely grateful all our amazing fundraisers, supporters, donors, ambassadors and patient champions whose enthusiasm, determination and dedication have helped ILFA to continue to support patients and families affected by lung fibrosis. Our fundraisers hard work has enabled ILFA to provide free educational materials, and exercise and practical resources to patients and healthcare professionals in hospitals and hospices around the country. 

Read more here

 

ILFA Christmas cards

Thanks to everyone who supported the 2017 ILFA Christmas Card Campaign and helped raise awareness of lung fibrosis and ILFA.

 

ILFA New Year Swim

ILFA's annual swim will take place on 1st January 2018 at 12.30 pm at Sandycove Pier, Dublin.

We will adjourn afterwards to FitzGerald's Pub (11 Sandycove Road, Dún Laoghaire) for hot soup and mince pies.

If you feel like taking the plunge, it would be a very healthy way to start the New Year, We would be delighted to see you and your supporters taking part! Please call 086 871 5264 for more information and a fundraising pack.

 

Thank you Nicky  

Nicky Goodbody, who set up ILFA with her good friends Terence Moran, Marie Sheridan and Professor Jim Egan in 2002, stepped down from the ILFA committee this week, after 15 years voluntary service.

Prof Jim Egan and Eddie Cassidy thanked Nicky for all her hard work and commitment to the charity over the years, and presented her with a bouquet of flowers and a special gift from her fellow committee members, as a token of everyone's deep appreciation.

We all join in wishing Nicky every happiness for the future.

 

 

ILFA 15 - special edition magazine is launched

2017 is a landmark year for ILFA as this year the charity reached our 15th anniversary! The idea for a special edition magazine, ILFA 15, started in April 2017 and the project offered an exciting opportunity to gather stories and reflect on ILFA's milestones and the advances in lung fibrosis care.

ILFA invited people from all over Ireland and beyond to share their experiences and personal perspectives with us.

ILFA 15 features articles from patients, doctors, nurses, allied healthcare professionals, clergy, researchers, patrons, professional respiratory bodies including the Irish Thoracic Society and The European Lung Foundation, volunteers, family members, fundraisers and support group members. The end result is superb and a credit to all the writers involved.

Click here to read ILFA 15 online. We hope you will enjoy reading ILFA 15.

To request a hard-copy, please email info@ilfa.ie or call 086 871 5264 

The photo shows some of the ILFA committee at the ILFA 15 magazne launch, Lynn Fox, Gemma O'Dowd, Prof Jim Egan and Nicola Cassidy.

 

ILFA supports a move to an Opt-out Organ Donation System

ILFA supports the introduction of a soft opt-out organ donation system in Ireland. A lung transplant is the only effective treatment for Idiopathic Pulmonary Fibrosis.
Over 700 people are currently on the transplant waiting list to receive new lung(s), heart, kidneys, and pancreas. Moving to a soft opt-out consent system could make a real difference. ILFA made a submission to the Public Health Consultation on the Human Tissue Bill 2017 to spport the proposed change to a soft opt-out system of consent for organ donation.

Please click the link and sign the electronic petition to show your support for this vital life-saving legislation.

 

Autumn ILFA Patient Information Day

The next ILFA Patient Information Day will take place at the Crowne Plaza Hotel, Northwood, Santry, Dublin on Saturday 21st October from 10m to 1pm.

The speakers will include;

  • Professor Anhony O'Regan, respiratory consultant, Galway University Hospital
  • Anne-Marie Russell, respiratory nurse specialist, Royal Brompton Hospital, London
  • Irene Byrne, respiratory physiotherapist, Mater University Hospital
  • Ciaran Heatley, respiratory physiologist, Mater University Hospital
  • Patient mpower

We hope you can join us to learn more about pulmonary fibrosis. All are welcome to this free event.

Please call 086 871 5264 to register.

 

Sad news

The ILFA committee is deeply saddened to let you know that our esteemed Chairman of 15 years, Terence Moran, has passed away.

Thank you to everyone who has sent messages of condolence. We have been touched by your kind words, and the warmth, respect and appreciation expressed for our dear friend.

Please remember Terence and his family in your prayers. 

 

Autumn Newsletter

ILFA's Autumn Newsletter is now available!

Click here to read the newsletter online.

If you would like to be added to ILFA's mailing list and receive our newsletter by post, please call 086 871 5264 or email info@ilfa.ie

 

 

Patient Information Day Videos

The first ILFA Patient Information Day of 2017 took place in Sligo on April 22nd, 2017. Three of the presentations were recorded and can be viewed by clicking on the links below. 
Sincere thanks to Tara Hannon - respiratory physiotherapist at Galway University Hospital, Lynn Fox - respiratory nurse specialist at the Mater Misericordiae University Hospital and Noreen O'Carroll - IPF patient, for agreeing to share their presentations online and on social media. We hope you find the videos useful.

 

 

 

 

ILFA Supporters Walk the Camino

"Normally the 10k mini marathon in June is enough of a challenge for us, but this year we (Ann Kennedy and daughter Fiona) decided to bring our ILFA support to Northern Spain where we did the last leg of the Camino de Frances, 80km over 3 days walking


Despite the heat and some unforgiving hills, we managed it with no problems. The route was amazing with plenty of beautiful cafes and restaurants along the way ensuring we never got too dehydrated! We met many other pilgrims along the way and finished Day 3 with the Pilgrim Mass in the impressive Cathedral of Santiago de Compostela.


We arrived back into Dublin the day before the Women's Mini Marathon and Ann finished off her week of walking in style by completing the10k mini marathon with her other daughters, Marianne and Deirdre."


Report by Fiona Kennedy

 

 

Congratulations and thanks to Professor Jim Egan 

Congratulations to Professor Jim Egan from the Mater Hospital in Dublin who successfully completed the Wicklow 100 cycle challenge on Sunday 11th June in aid of ILFA.

If you would like to sponsor Professor Egan, you can donate securely online to ILFA via the following link.

https://wicklow-200.everydayhero.com/ie/jim

 

 

VHI Women's Mini-Marathon 2017

Well done and thank you to all the ladies of Team ILFA 2017!!!

More photos and a report of the day will follow ...

 

 

 

 

Please support Professor Jim Egan's Wicklow 100 Cycle in aid of ILFA

Professor Jim Egan from the Mater Misericordiae University Hospital in Dublin has signed up to take part in the gruelling Wicklow 100 cycling challenge to raise funds for ILFA on June 11th.

You can sponsor Professor Egan online at the following link:

https://wicklow-200.everydayhero.com/ie/jim

Please help Prof Egan reach and surpass his fundraising target. Remember every little helps and will go a long way to supporting those affected by lung fibrosis.

Go Prof Go!!!

 

 

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.

The leaflet accompanies our hand held fans that are used to help relieve 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.

We would love your feedback on the fan and ask that you fill out a short survey after using it for a week or two. The survey is available in paper form or you can click the link to answer the survey online.

ILFA's new hand-held fans are now available for patients, respiratory nurses and physiotherapists to order free of charge. Call ILFA on 086 871 5264 or email info@ilfa.ie to order a hand-held fan and leaflet.

 

 

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 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.

 

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

 

 

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.

 

 

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