NICS Well Programme Webinar – Understanding Pulmonary Fibrosis in Northern Ireland (8/9/25)

To coincide with World Pulmonary Fibrosis Awareness Month PFNI had the privilege of hosting a Wellbeing Programme webinar ‘Understanding Pulmonary Fibrosis in Northern Ireland’ with the Northern Ireland Civil Service, and what an inspiring session it was! We explored: Who are Pulmonary Fibrosis NI?  What pulmonary fibrosis is and how it impacts lives? The common signs, symptoms, and current treatment …

FDA approves drug to treat idiopathic pulmonary fibrosis (US FDA)

https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-drug-treat-idiopathic-pulmonary-fibrosis Please note that this is only approved in the USA – it will have to go through further approval processes before it may be available in the UK & NI. This could take several years.

Wellbeing Trip 2025 – Enniskillen (23/8/25)

  After the resounding success of the 2024 Wellbeing Trip there was no doubt that 2025’s trip would be even better! Members & carers travelled from all over NI, or hopped aboard the PFNI minibus along the way, to arrive at the Round O park in Enniskillen before embarking the  “MV Kestrel” to enjoy tea/coffee & scones as they listened …

Health Minister, Mike Nesbitt, visits Inis Ceithleann (6/8/25)

We were pleased to welcome the Health Minister, Mike Nesbitt, to Inis Ceithleann to view our superb respite facility and to hear the lived experience of those with Pulmonary Fibrosis (PF), those who care for family with PF, the medical professionals with a wealth of PF knowledge & experience, and the work of Pulmonary Fibrosis NI in raising the profile …

Managing Fatigue – Patricia Hutchinson, NI Hospice (7/10/25)

What is fatigue? How can I manage it? How can I do what I need to do without exhausting myself? Patricia explains the various ways to manage your fatigue by taking control of the various factors that lead to debilitating fatigue. If you missed the zoom meeting you can catch up on all the hints & tips here Before you …

BALR/PF-NI Summer Studentship 2025: Angela Liu

In 2025, BALR/PF-NI supported two 8-week summer studentships for students interested in taking part in research on pulmonary fibrosis over the summer. Since its completion, the students have had the opportunity to present their results at the annual conference of the British Association for Lung Research (BALR) held in Cardiff. See below for a detailed description of Angela’s project. Angela’s …

BALR/PF-NI Summer Studentship 2025: Darren Chow

In 2025, BALR/PF-NI supported two 8-week summer studentships for students interested in taking part in research on pulmonary fibrosis over the summer. Since its completion, the students have had the opportunity to present their results at the annual conference of the British Association for Lung Research (BALR) held in Cardiff. See below for a detailed description of Darren’s project. Darren’s …

Leah & Cameron take to the sky for PFNI (7/2025)

Leah O’Toole and Cameron Lombardi tell their story:  We are based in Cork and last year, on 6th April 2024, Cameron’s grandad, Jimmy, sadly passed away from pulmonary fibrosis. He was a much loved husband, father, and grandad and his family meant the world to him. So this summer, we did a skydive in Jimmy’s memory and to fundraise for …

BMMCNI Motorcycle Display, Balnamore (22/6/25)

On 22 June 2025 Paul Mullan and Vintage & Classic Motorcycle (Worldwide) hosted a motorcycle display in Balnamore. Typically, when you want good weather, the skies opened but a few hardy souls defied the elements & their bikes were a tribute to their love of their vintage/classic bikes. With plenty of stories and great craic amongst those who braved the …

Making the most of your Medical Appointments

Being diagnosed with Pulmonary Fibrosis can be a frightening experience. It is, therefore, important to obtain as much information as possible from your medical team. This information will help you to live better with your diagnosis and help you understand what it means. To help you prepare, here are some hints & tips: Consultations with your medical team are a …

Anxiety – hints & tips

If you’re feeling breathless or anxious, there are breathing techniques to help you feel more in control and more comfortable. Practice Breathing control at Home: Breathing control is useful when you’re short of breath or feeling anxious or panicked. It helps you make the best use of your diaphragm, your main breathing muscle. Your diaphragm contracts when you breathe, so …

Cork welcomes Pete the Puffling – Alicia & Cian “What a Wonderful World” (video)

In February 2025 we were invited to Cork to launch “Pete the Puffling’s Brave Adventure” by the Douglas Branch of the Irish Countrywomen’s Association. We were honoured to be addressed by the Lord Mayor of Cork, Dan Boyle and delighted that so many members came along to hear the story of Pete the Puffling & PFNI. Alicia & Cain sang …

Cork welcomes Pete the Puffling – Alicia & Cian “I can see clearly now” (video)

In February 2025 we were invited to Cork to launch “Pete the Puffling’s Brave Adventure” by the Douglas Branch of the Irish Countrywomen’s Association. We were honoured to be addressed by the Lord Mayor of Cork, Dan Boyle and delighted that so many members came along to hear the story of Pete the Puffling & PFNI. Alicia & Cain sang …

Cork welcomes Pete the Puffling – PFNI chairman’s closing address (video)

In February 2025 we were invited to Cork to launch “Pete the Puffling’s Brave Adventure” by the Douglas Branch of the Irish Countrywomen’s Association. We were honoured to be addressed by the Lord Mayor of Cork, Dan Boyle and delighted that so many members came along to hear the story of Pete the Puffling & PFNI.

Cork welcomes Pete the Puffling – book reading by Ryan Donohoe (video)

 In February 2025 we were invited to Cork to launch “Pete the Puffling’s Brave Adventure” by the Douglas Branch of the Irish Countrywomen’s Association. We were honoured to be addressed by the Lord Mayor of Cork, Dan Boyle and delighted that so many members came along to hear the story of Pete the Puffling & PFNI.  

Cork welcomes Pete the Puffling – Una McMillan’s address (video)

In February 2025 we were invited to Cork to launch “Pete the Puffling’s Brave Adventure” by the Douglas Branch of the Irish Countrywomen’s Association. We were honoured to be addressed by the Lord Mayor of Cork, Dan Boyle, and delighted that so many members came along to hear the story of Pete the Puffling & PFNI.  

Cork welcomes Pete the Puffling – Tom McMillan’s address (video)

In February 2025 we were invited to Cork to launch “Pete the Puffling’s Brave Adventure” by the Douglas Branch of the Irish Countrywomen’s Association. We were honoured to be addressed by the Lord Mayor of Cork, Dan Boyle, and delighted that so many members came along to hear the story of Pete the Puffling & PFNI.  

Cork welcomes Pete the Puffling – Clare Donohoe’s address (video)

In February 2025 we were invited to Cork to launch “Pete the Puffling’s Brave Adventure” by the Douglas Branch of the Irish Countrywomen’s Association. We were honoured to be addressed by the Lord Mayor of Cork, Dan Boyle, and delighted that so many members came along to hear the story of Pete the Puffling & PFNI.

Cork welcomes Pete the Puffling – Lord Mayor’s address (video)

In February 2025 we were invited to Cork to launch “Pete the Puffling’s Brave Adventure” by the Douglas Branch of the Irish Countrywomen’s Association. We were honoured to be addressed by the Lord Mayor of Cork, Dan Boyle, and delighted that so many members came along to hear the story of Pete the Puffling & PFNI.  

Killylea Coffee Morning – Crozier family presentation (16/8/25)

Andy Crozier and his family met with Tom (Chairman) & Una (Trustee) in Ballycastle to make a presentation to PFNI following the Coffee Morning they held in their church hall in Killylea on the 19th July. Around 500 people from their local community came along to support Andy and his family. Andy’s beautiful wife Emily and the mother of such …

RADAR Key Scheme & Changing Places

RADAR keys are available to everyone who needs access to some public toilets throughout Northern Ireland. Below is some detail about the RADAR scheme. The National Key Scheme, sometimes known as the RADAR Scheme, was developed because some public toilets designed for disabled people had to be locked to prevent damage and misuse (for example Changing Places facilities). This has …

New results from the FIBRONEER clinical trials for treating pulmonary fibrosis

Summary Two clinical trials have shown promising results on the effects of a new drug called nerandomilast for treating idiopathic pulmonary fibrosis (IPF) – the FIBRONEER-IPF trial, and other forms of progressive pulmonary fibrosis (PPF) – the FIBRONEER-ILD trial. The details have been published in the New England Journal of Medicine (see articles here: FIBRONEER-IPF and FIBRONEER-ILD). The FIBRONEER-IPF trial …

Puffin Lodge to Inis Ceithleann in a 40K per day run!

Tonight at Puffin Lodge, in Ballycastle, Una, Ian, and Tom met with Paddy McDermott and his sisters. Paddy will be setting off tomorrow from Puffin Lodge on Thursday 17th July, early in the morning, and running to our Enniskillen respite (Inis Ceithleann), over 120 miles in 4 days to raise awareness and funds for Pulmonary Fibrosis NI. We took the …

Walk for Warriors – with a little help from my friends!

There’s a video! – click on the title to open this page Roberta hadn’t been feeling too well recently and wasn’t able to do as much walking for her “Walk for Warriors” challenge as she had hoped. Her great team of friends and family rallied round and completed laps of their local park finishing with a well earned tea and …

PFNI Patron, Julie Hesmondhalgh, visits our new Puffin Lodge

There’s a video! Click on title to open the page. Whilst working in Belfast Julie took time out of her busy schedule to visit our brand new Puffin Lodge II. Was she impressed? You bet she was! From the fantastic views across the bay to Rathlin Island and the Paps of Jura beyond to the superb layout, cosy bedrooms & …

PFNI AGM notice

Save the Date – PFNI Annual General Meeting We are pleased to invite you to our upcoming Annual General Meeting, which will take place on Saturday, 30th August 2025 at 1:00 pm in Whitehouse Primary School, Newtownabbey. All members of Pulmonary Fibrosis NI are warmly encouraged to attend — including patients, carers, families, and supporters. Your presence and participation are …

Safety When Using Oxygen Equipment or Cylinders at Home or Elsewhere.

Do: Keep your device (concentrator or cylinders), at least 3 metres away from any appliances that use an open flame like a gas cooker, multi fuel burner, gas fire, candles,  camping cooker etc. Turn off your oxygen supply fully, when you’re not using it. Keep your device in a well-ventilated room. Make sure oxygen equipment is used in a well-ventilated …

Talk: Drug Trials Explained + Q&A – Dr N. Chaudhuri (28/1/25)

Dr Chaudhuri joined the Tuesday PFNI Support to talk about drug trials and answer questions from attendees. Watch the recording of the meeting to find out more about PF drug trials and how you be part of the research project! Before you click the link please take a note of this passcode (or copy, click link, & paste into the …

Balcas Energy certificate presentation (15/1/25)

Clare Donohoe (Trustee) met with her late husband Tommy’s colleagues at Balcas Energy, Enniskillen yesterday to present a Certificate of Appreciation in recognition of their generous donation of £1000 to Pulmonary Fibrosis NI in honour of Tom. Thank you to Roisin, Gary, Mark, William and Paul for making Clare so welcome and for accepting this certificate which now has pride …

Dungannon Author goes “Down Memory Lane” to raise funds for PFNI (18/1/25)

Richard Scott and his friend Ian presented us with a cheque for £1,570.00 – the proceeds from the sale of his booklet, “Down Memory Lane in Dungannon”. The booklet is full of historical information about Dungannon and is a great read! This is the 3rd time Richard has put a booklet together and he has raised over £8k for charities …

Raymond “Boots” Callaghan’s PPE plea to construction workers (17/1/25)

Raymond “Boots” Callaghan shares his experience of working in the construction industry, workplace H&S training & his concern for others in their reluctance to use the recommended PPE. Boots, as he was affectionately known, passed away on 18th December 2024 but wanted his message to be heard.   View this post on Instagram   A post shared by Band of …

Talk: Relaxation Taster Session with Patricia Hutchinson, NI Hospice (10/12/24)

Make yourself comfortable and join our Relaxation Taster session. Patricia will help you explore the many ways to relax your mind & body and find the technique that works best for you. There will be something to suit everyone! Yes, you may well fall asleep so set your alarm before you start! Before you click the link please take a …

2025 Calendar out now!!!

William McElroy has, once again, created a stunning calendar in aid of PFNI. Order on the PFNI website shop  Calendars cost £6 each plus £3 p+p For orders of 3 or more calendars please contact Ian  ian.pfni@gmail.com

Pete the Puffling’s Brave Adventure @ Enniskillen Integrated Primary School

On Tuesday 3rd Dec ’24 we were privileged to attend Enniskillen Integrated Primary School where we read ‘Pete the Puffling’s Brave Adventure’ to all year groups, approximately 500 children! A fantastic time was had and there was a special appearance from Elfie and Stitch (thank you to Jolene from The Party Bees) who handed out PFNI stickers book marks and …

“Pete & Tilly Club” launched

‘The Pete and Tilly Club’ has been set up by PFNI to offer family members support, compassion, empathy and love following the passing of a family member due to Pulmonary Fibrosis. It is envisaged that this WhatsApp group will connect and support family members who, whilst we have had different journeys, we have all, sadly, been directly impacted by the …

PFNI Sponsored Research Studentship

During the summer of 2024 PFNI sponsored two student research placements. Not only have we helped progress important research, we have also inspired a future clinician. Great work, Alexander! BALR/PF-NI Summer Studentship: Alexander Reid As a second-year medical student, I never imagined I would have the chance delve into research Yet, here I am, reflecting on an incredible summer studentship …

Talk: Managing Stress & Anxiety by Patricia Hutchinson, NI Hospice (Zoom 12/11/24)

If you missed Patricia’s talk at our Zoom support group meeting on 12th Nov 2024 you can watch it now. Make a note of this passcode; you’ll need it to access the recording: x3%Msa1m  (the number one-before-end is a ONE) Click on link to start: https://us02web.zoom.us/rec/share/c2C4MvJ8Xz5f6mn_TytM-5Nrk0kOBQ8ME6O7LrvlI38hb2npUcO3u16Z2mTcK7LE.Vp3REuxOT09_P4Hm

Alex runs rings around the Dublin marathon!

Today our Trustees were honoured to have met with Alex and Valerie at ‘Inis Ceithleann’. Alex recently completed the Dublin Marathon, raising an incredible £2200.82 plus £447 in gift aid for PFNI, and concurrently raising awareness of pulmonary fibrosis. Alex wrote, “It (sic PF) is a hereditary condition that has affected members of my family and most recently my Granda. …

Ian goes for another half!

Ian Simpson (PFNI Trustee) isn’t known for his fondness of halves – he’s definitely more of a pint man. However, when it comes to honouring his ‘Carlsberg neighbour’, Jimmy Balmer, he’s more than happy to take the hit! Ian joined forces with his daughter, Abigail,  and Karin Balmer to run the Oxford Half on 13th October 2024 together raising £1,000 …

BRM Tractor Pull raises over £16K!

Several members of PFNI attended the Tractor Pull in Dungiven on the 31st August and were treated to a great day out. Stephen Kealey and his team at BRM services along with the Smyth family and others worked extremely hard to make the day a fantastic success and it was a pleasure to thank each of the (46) individuals on …

Freddy’s Fryer!

Earlier this month Clare Donohoe & her son, Ryan, were delighted to receive an Air Fryer from good friend, Freddy. The air fryer will be a great addition to our new respite house at Lough Erne Golf Resort, “Inis Ceithleann”. Freddy, thank you for your very generous donation; you’ve rescued our visitors from having to wash all their burnt oven …

Busting a move at Enniskillen IPS disco!

Report by Clare Donohoe, PFNI Trustee I was privileged to be invited to attend Enniskillen Integrated Primary School today, where I was presented with a cheque for £1583 by the School’s Council. This money was raised through a school disco and tuck shop. A very special thank you to all the children and to Mr O’Neill and Mrs Nolan for …

BRM Charity Tractor Pull – keepin’ ‘er lit!!

What an incredible day at the BRM Charity Tractor Pull in Dungiven! Apparently the revs from the big tractors could be felt at the Giant’s Causeway generating rumours of Finn McCool’s return! The PFNI Outreach Team were there too and it was fantastic to have the opportunity to chat with so many people from the farming community & to increase …

Talk: Dietary advice for people living with ILD & their carers (Zoom 8/10/24)

We welcomed Stephanie Allen, dietician, to our Tuesday Zoom Support Group on 8/10/24. Stephanie shared excellent advice on healthy eating, maintaining weight, appetite loss and many of the other dietary issues that go with Pulmonary Fibrosis. Make a note of this passcode before clicking the link below: iMVi0!%r   (the ‘o’ is a zero) Click here to watch the zoom …

The Breath Sensei – date change

Learn how to Breath Correctly with David Toner (Breath Sensi) Pulmonary Fibrosis NI has organised 2 x 2hr evening sessions, on ZOOM, on Sunday 27th October & Sunday 10th November 2024, 6pm until 8pm. The last time David ran this course for us he helped so many people improve their breathing. There is a lot to the course; it will help …

Tullycreevy Tommy (Lot 58) @ Richard Beattie’s, Gortin on 5 Oct, in aid of PFNI

Have you ever seen a more handsome Tup? Tullycreevy Tommy has been donated to PFNI by Richard & Kirsty Patrick and named in memory of their friend Tommy Donohoe. Charity lot: Tullycreevy Tommy lot 54 Richard wrote, “This is our first Tup shearling into the ring at the Northern Ireland Swaledale sale on October 5th at Richard Beattie’s, Gortin. He …

Country & Western Weekend @ Causeway Coast Holiday Park

Yee-haw!!! Polish your boots & dust off your stetson – it’s time to get on down to the Causeway Coast Holiday Park for a weekend of Country & Western fun in aid of PFNI! Check out the events on the link below! Come along on the day or stay for the weekend! (PFNI members discount available on accommodation) https://fb.watch/uxa0Iej6Yr/

Coffee Morning – Causeway Coast Holiday Park 21 Sept ’24

Join Us for a Coffee Morning in aid of Pulmonary Fibrosis NI! We’re excited to invite you to a special Coffee Morning supporting Puffin Lodge and Pulmonary Fibrosis NI on Saturday, 21st September at the Gawn Inn/Beach Bistro from 11:30am-3:00pm. Whether you’re an owner, guest, or local, we’d love for you to come along, enjoy a cuppa, and support this …

Hadi’s Charity Bike Ride – SWAH to Wicklow

On 2nd August this fantastic group of cyclists from SWAH Emergency Department set off from South West Area Hospital, Enniskillen & completed a 2-day plus cycle to Wicklow Head Lighthouse in aid of PFNI & SWELL Fermanagh. Our very own Clare Donohoe cheered  them off as they pedalled away. A big thank you to the dedicated, and no doubt sore, …

‘Inis Cethleann Retreat’ key hand-over!

Friday 26th July was a monumental day for Pulmonary Fibrosis NI. Following a tremendous effort by everyone involved with our wonderful charity we received the keys to our new retreat in the beautiful Lough Erne Golf Resort Village. Our new property, now known as “Inis Cethleann Retreat”, will provide respite for pulmonary fibrosis sufferers and their carers for many years …

Daniel swims the Channel for his Granny & PFNI

Congratulations Daniel – you’re an inspiration to so many! Read all about it in this Belfast Telegraph report! https://m.belfasttelegraph.co.uk/news/northern-ireland/newry-teenager-becomes-youngest-person-to-swim-the-north-channel/a1754261563.html photo: Belfast Telegraph