Read what Pulmonary Fibrosis NI have been up to in April and May 2026. April-May 2026 PFNI Newsletter

The European Pulmonary Fibrosis Patient Summit 2026 brought together patients, caregivers, clinicians, researchers and policymakers from across Europe in Brussels for three days of collaboration focused on improving care for people living with pulmonary fibrosis and related interstitial lung diseases (ILDs). Organised by the European Pulmonary Fibrosis Federation, the Summit highlighted ongoing gaps in diagnosis, access to care and support, …

Ian (Trustee) and Clare (Charity Co-ordinator) had the privilege of attending the Tamm Donnelly annual charity football tournament on 28 December 2025 at St Patrick’s High School Keady. This tournament was in honour of Tamm who passed away with cancer, and his best pal who was an avid member of PFNI and made it his mission to raise awareness of …

Pulmonary Fibrosis Charity Handover: Honouring Ruth McElroy and Raising Awareness of Pulmonary Fibrosis in Farming Communities The McElroy family recently welcomed friends and supporters to Old Friends Day Care in Lisburn for a very special evening of remembrance and gratitude. The occasion marked the official handover of funds raised in memory of Ruth McElroy, who passed away on 3rd October …

Julia Ellis, Manager, Progressive Building Society Enniskillen handing over a donation of £500 towards the cost of our Wellbeing Day 2025.  Julia has also offered to sell Pete the Puffling’s Brave Adventure in the Enniskillen Branch of The Progressive.  Thank you for your support Julia.

On 28 August 2025, Trustees of PFNI, Dr Nazia Chaudhuri, Ian Simpson and Tom McMillan travelled up to the Ulster University School of Medicine Year 1 Student Opportunities Fair 2025. It was great to interact with our future doctors and explain to them about the work of PFNI and talk to them about pulmonary fibrosis. We even managed to recruit …

Valerie Brown (PFNI Ambassador) and Clare Donohoe, Charity Co-ordinator were privileged to visit with Mervyn and Alice Gould on 4th September 2025 at Kinawley, Co Fermanagh, to receive a donation of £600 from Mervyn’s 80th birthday celebrations. Thank you to Alice and Mervyn and their family and friends for their incredible generosity in donating to Pulmonary Fibrosis NI. What a …

Leah and Cameron Our 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 Pulmonary Fibrosis Northern …

In April 2025 Ian Simpson (Trustee) attended Ormeau park to meet up with the many runners that donned the blue shirt and raised awareness and money for PFNI. These are just some of the folk from Ward 3B Ulster Hospital who have raised over £4500 so far. Hats off to the ladies and gents who took on the relays in …

Una, Judith and Tom spent a lovely day at Kilrea Golf Club with Roddy Quinn and others involved in fundraising for PFNI in May 2025. Roddy was appointed club captain last year at Kilrea golf club and used his captaincy to promote awareness about pulmonary fibrosis and the work of PFNI over the last year. He organised a number of …

Tom McMillan (Chair) attends EUPFF Patient Advocacy Forum in Frankfurt in April 2025. This was the first EU-PFF Patient Advocacy event in Europe, with representatives from all around Europe meeting for 4 intense days of training and networking. I was fortunate to be part of to an extremely informative and educational four days, mixing with some of Europe’s top respiratory …

Clare Donohoe hosted Jemma Dolan MLA at Inis Ceithleann Retreat. Jemma and her placement student Blaithin were very interested in the work of PFNI and both were very impressed with the wonderful retreat we have to offer patients and their families.

PFNI hosted Minister Mike Nesbitt MLA (Health Minister) at Inis Ceithleann Retreat on 6th August 2025. The Minister was very impressed with our retreat facility and he learned about pulmonary fibrosis through an emotional address by Una (Trustee) and Clare (Charity Co-ordinator) who described their lived experience. Dr Chaudhuri also gave an insightful overview of Pulmonary Fibrosis in NI, and …

Tom, Una, Pat, and Clare were delighted to attend the BRM Revvv It Up 2026 planning meeting in Dungiven on 11th October 2026, invited by Stephen Kealey as representatives of the PFNI. We were there to speak to the audience and hear about the incredible plans being put in place for next year’s festival on 17th, 18th & 19th July …

As a very close friend of David Coffey, and having himself Prostate Cancer in 2019, Gordon decided to raise money for PFNI and Prostate UK charities. Gordon completed the challenge on 30th November 2025 at Dundrum Coastal Rowing Club cheered on by club members and Fay Coffey (Trustee) from PFNI. Donations will close in February 2026. The amount raised currently …

The Coffey family organised a coffee morning on 28th June 2025. This occasion marked the 2nd Anniversary of Dave Coffey, Husband, Dad, Grandad 💔. £2075.00 plus gift aid was raised.

PFNIs Chairman, Tom McMillan recently represented Pulmonary Fibrosis NI at an event at Stormont organised to celebrate the achievements of the Northern Ireland Team at this year’s transplant games. The team came 11th out of 51 achieving 18 gold medals 👏👏👏

Marian O’Sullivan and I had the pleasure of reading Pete the Puffling’s Brave Adventure to 144 children in Douglas and Bishopstown libraries and Douglas Rochestown ETNS 🥰 Some of the children expressed that their Grandpa or Grandma has had pulmonary fibrosis, and are on oxygen. The children were very attentive and inquisitive. There were lots of questions including the inspiration …

Pat Gorman (Scientific Officer and Specialist ILD Nurse) and Clare Donohoe (PFNI Co-ordinator) attended the 2025 European Respiratory Patient Academy in Prague in November 2025. The Academy included a rich mix of interactive discussions, practical workshops, and expert-led sessions focusing on key topics in respiratory health advocacy, patient engagement, and policy influence. Pat and Clare found this an immersive learning …

Learn valuable tips for managing anxiety and stress from Patricia Hutchinson

Dr Bettina Schock, Senior Lecturer, School of Medicine, Dentistry and Biomedical Sciences, Queen’s University Belfast, providing an overview of Pulmonary Fibrosis research in Northern Ireland, some of which is supported by PFNI.

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 …

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 …

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 …

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 …

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 …

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 …

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 …

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 …

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 …

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 …

‘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 …

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 …

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

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 …

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 …

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 …

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 …

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 …

If you missed Cathy’s talk at our Zoom support group meeting on 13 Aug 2024 you can watch it here. Make a note of this passcode; you’ll need it to access the recording: yHB3*dZd Click on link to start: https://us02web.zoom.us/rec/share/sWjuDA1fSeS2O0L5Ltxf2eIxLq51T2xBMK9XS8z5xQe0UqCLTz7CIlEkvxRGHdg.bz2WTBfrEaw7IoEz

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 …

Join the Pulmonary Fibrosis Northern Ireland charity group for an exciting virtual walk from Ballycastle to Enniskillen, covering 123 miles. Taking place from 1st June to 30th September, this event allows participants to complete the distance in their own way, whether by walking, running, or even cycling. This is a fantastic opportunity to support a great cause while enjoying the …

Karin Balmer and her friends completed the Oxford Half Marathon on Sunday, October 16th to raise funds for a pulmonary fibrosis support group. Through their hard work and dedication, they were able to secure a large sum in donations. Karin has been training for the past six months and ran the entire 13.1 miles without stopping. This is an incredible …

Tom and Una McMillan were recently featured in the APF periodical, Pulmonary Fibrosis News. The article highlighted the couple’s work with Pulmonary Fibrosis NI, a charity that raises awareness of the lung condition and provides support for those affected by it. The McMillans have been involved with the charity since its inception , and their work was instrumental in getting …

The Northern Trust Pulmonary Fibrosis Support Group is delighted to inform you that on the 8th February 2022 we received our certificate of incorporation from Companies House. We are also a fully registered charity with the Charity Commission Charity Number NIC109094. We are delighted to inform you that we have purchased our first respite facility at Causeway Coast Holiday Park, …