Dr Paul Minnis gives an overview of Respiratory Research and Clinical Trials

Dr Paul Minnis, Specialist in Interstitial Lung Disease and Director of Research & Development in the Northern Trust gives an overview of Respiratory Research and Clinical Trials He talks about the current state of Respiratory Research, the context (Career path), discusses from the Director and Regional Viewpoint and gives an overview of current clinical trials.  

The Trilogy (Breathlessness)

The Trilogy (Breathlessness): Breathlessness can be a frightening and distressing symptom of pulmonary fibrosis. You can learn how to minimise, cope with and manage this symptom – and make a big difference to your quality of life. The causes of breathlessness: We feel breathless when our muscles sense that they are not getting the oxygen they need. So they send …

Breathing Techniques Continued …

Continued on the same Theme: Managing breathlessness when bending: You may experience breathlessness and discomfort when bending if you have pulmonary fibrosis. This is a common problem, as the action of bending squashes and restricts the muscles of breathing so they don’t work as effectively, making you feel more breathless. If you are carrying additional weight especially around your abdomen, …

Some tips and advice on Breathing techniques. Try them they do help!

Some tips and advice on Breathing techniques. Try them they do help: If you’re feeling breathless or anxious, there are breathing techniques to help you feel more in control and more comfortable. You need to practise breathing technique, it will really help you to mange your breathlessness and feel more in control. Breathing control: Breathing control is useful when you’re …

European Pulmonary Fibrosis Foundation Summit 2006 Report

The 4th European Pulmonary Fibrosis Patient Summit brought together 398 participants from 18 countries across Europe and beyond, marking a landmark moment for the PF community. Held over three days in Brussels from 24 to 26 April 2026, the Summit united patients, caregivers, clinicians, researchers, policymakers and industry partners around a shared mission: to accelerate progress for people living with …

European Summit Calls for Urgent Action to Ensure No Pulmonary Fibrosis Patient Is Left Behind

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, …

Communities Drum Up Support for Pulmonary Fibrosis in Inspiring ‘Beats for Breath’ 24 Hour Drumathon Campaign

Students, pupils, musicians and international performers have come together in a powerful show of community spirit, raising awareness and vital funds for Pulmonary Fibrosis NI (PFNI) through a unique series of drumming events across Tyrone and Fermanagh. The initiative, spearheaded by Donna Cooney to honour her husband George and his brothers, entitled “Beats for Breath,” took place during the first …

Condition Management Programme – Tuesday 24th February 2026

Learn about the Condition Management Programme, where Natalie McCrea Occupational Therapist/Acting Team Lead and Caoimhe Keane, Physiotherapist from the Western Trust give an overview of the support available to help patients manage their health, work and wellbeing.

Royal Arch Masons Donate £1,350 to Support Pulmonary Fibrosis Patients

Pulmonary Fibrosis NI would like to extend our sincere thanks to the Londonderry, Donegal, Tyrone and Fermanagh District Grand Chapter of Royal Arch Masons for their generous donation of £1,350. Tom McMillan, Chair of Pulmonary Fibrosis NI, recently visited Eglinton to meet with members of the District Grand Chapter. During the meeting, Tom was formally presented with a cheque by …

Relaxation Techniques Session with Northern Ireland Hospice

We were delighted to welcome Patricia Hutchinson from Northern Ireland Hospice for a highly engaging and informative session on relaxation techniques for our pulmonary fibrosis members, patients and carers. The session explored the importance of relaxation and the many benefits it can bring, including managing anxiety and stress, helping with fatigue, alleviating nausea and vomiting, supporting pain management, reducing breathlessness, …

Raising Awareness at CAFRE Greenmount

On Tuesday 3rd February Fay Coffey (Trustee) and Clare Donohoe (Co-ordinator) from Pulmonary Fibrosis NI were out raising awareness at the CAFRE Student Wellbeing Day at Greenmount Campus, Antrim. We were delighted to speak with so many students and staff who stopped by our stand to learn more about pulmonary fibrosis. While only one person had previously heard of PF, …

Giving Patients a Voice: Sharing the Reality of Pulmonary Fibrosis with Respiratory Nurses from across Northern Ireland

Una McMillan (PFNI Trustee) and Tom McMillan (PFNI Chair and Trustee) were delighted to be at Queen’s University Belfast today, kindly invited by Dr Mark Dornan, to speak with qualified respiratory nurses from across Northern Ireland. We talked openly about what it is really like to live with pulmonary fibrosis, the everyday challenges patients face, and the vital work of …

Ambassador Induction & Training Event – Empowered to Act. Trusted to Lead.

Saturday 24 January 2026 | Whitehouse Primary School, Newtownabbey On Saturday afternoon, 24th January 2026, Pulmonary Fibrosis NI welcomed our ambassadors and trustees to a very special Ambassador Induction & Training Event, a gathering built around connection, learning and a shared commitment to shaping a better future for everyone affected by pulmonary fibrosis. Guided by the theme “Together, our voices …

PFNI were represented at ‘Don’t hold your breath’ Event in Ballynahinch

Fay Coffey (Trustee), Ian Simpson (Trustee) and Clare Donohoe (Co-ordinator) attended ‘Don’t Hold your Breath’ event at The Millbrook Lodge Hotel on 15th January 2026. This event was hosted by Mid Down UFU. The audience was provided with insightful information from Mr Peter Howard from Boehringer Ingelheim and Dr Jillian Johnston from the Public Health Agency on emerging livestock vs …

Queen’s Medical Students have an Audience with our Patient Support Group

At this week’s Patient Support Group on Zoom, we were privileged to  host 3 medical students from Queen’s University who learned about the lived experience of people who have pulmonary fibrosis, including their experiences of diagnosis, living with the disease, disease management and medication and side effects, and the experience of carers on the PF journey. The students were very …

PFNI vehicles get logos added to raise our profile

A special thank you to CC Printing from Enniskillen who expertly added our Logo and contact information to our 2 vehicles. This will undoubtedly raise our profile around the country. They look spectacular.

Anne McCord, Lead Respiratory/ILD Pharmacist in the SHSCT shares important information about Pharmacological considerations in ILD

At our Patient Support Group on 13 January 2026, we were delighted to have Anne McCord, Lead Respiratory/ILD Pharmacist in the SHSCT present important information about Pharmacological considerations in ILD to our patients and carers. Please watch the video to learn about supportive medications used in ILD for cough and/or breathlessness, Mucous/sputum, Exacerbations (antibiotics and steroids), inhalers, vaccines, supplements, managing …

Gordon’s 1OK a day for 30 days Cheque Presentation

Tom McMillan (Chair) and his wife Una (Trustee) met with Gordon Kendall, his wife and Fay Coffey, Trustee, at Dundrum rowing club on Sunday 11th January 2026 for a cheque presentation following his epic challenge of rowing 10K a day for 30 days in November 2025. Gordon raised over £4,000, which was divided equally between Pulmonary Fibrosis NI and Prostrate …

Pulmonary Fibrosis Fundraiser – in memory of Jimmy McKinney (RIP)

On Sunday 9th November around 200 people completed a 5k walk in memory of Jimmy, a much loved and missed husband, dad, brother and friend to many. The weather was perfect with blue skies and sunshine making it a very enjoyable and memorable occasion as we walked the route Jimmy so often walked. Everyone was served tea/coffee & snacks after …

🎅 A Visit from Santa & His Very Handy Elves! 🧝‍♀️🧝‍♂️🧝

On a little visit to Inis Ceithleann Retreat today, we received the most wonderful surprise… it seems Santa and his elves have been here ahead of schedule! Tucked among the festive magic was a note left just for the Pulmonary Fibrosis NI family, which read: “Dear Pulmonary Fibrosis NI family, We have received an anonymous donation from a ‘furniture workshop’ …

Pulmonary Fibrosis Charity Handover of £6,350 Honouring Ruth McElroy and raising awareness of Pulmonary Fibrosis in the Farming Community

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 …

PFNI receive a generous donation of £600 from Mervyn Gould’s 80th Birthday Celebrations

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 complete a skydive in memory of their dear Grandad Jimmy

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 …

Ryan’s fundraiser in memory of his dear Father, Paul McBride

Una McMillan, Trustee and Tom McMillan Chair were invited to St Patrick’s Academy Dungannon in May 2025. Ryan McBride held a fundraiser at the school in memory of his Father Paul. Tom and Una were delighted to meet with the pupils and staff and to receive a cheque on behalf of PFNI from Ryan.

Ward 3B Ulster Hospital raised over £4500 for PFNI

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 …

Kilrea Golf Club Cheque Presentation for £8905.49

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

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 …

Jemma Dolan MLA visits Inis Ceithleann Retreat

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.

Jacqueline and Sarah’s Christmas Fireside Quiz for PFNI 2024

In January 2025, Una and Tom visited Cullybacky College where they met with staff and members of the PTA and gave a talk about Pulmonary Fibrosis. They were presented with a cheque from the PTA for £500 raised by Jacqueline Hanna’s Christmas Fireside Quiz, for PFNI. Tom and Una also took the opportunity to thank Jacqueline and her Father Jackie …

Reading ‘Pete the Puffling’s Brave Adventure’ at Enniskillen Integrated Primary School

2 December 2024 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 love heart …

PFNI hosts Minister for Health, Mike Nesbitt MLA at Inis Ceithleann Retreat

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 …

Celebrating our amazing Ambassadors – 4th October 2025

The Chair and Trustees of Pulmonary Fibrosis NI recently held an Ambassador Appreciation Event to celebrate the advocacy of our wonderful volunteer ambassadors. Workshops were held to brainstorm awareness and fundraising opportunities for the forthcoming year.        

🚜🔥 Revvv It Up 2026: Bigger, Louder & More Exciting Than Ever! 🔥🚜

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 …

Storytime, Smiles & Support at Aughnacloy Primary

An early start for Una, Ian and Tom on the road from Ballycastle at 6 am and down to Co Armagh to visit the wonderful pupils and staff of Aughnacloy Primary School. We had an assembly hall full of around 200 excited children and teachers, all gathered to learn about Pulmonary Fibrosis and to hear Pete the Puffling’s Brave Adventure. …

Lough Erne Golf Club Cheque Handover

Clare Donohoe (Charity Co-ordinator) had the privilege of attending The Lough Erne Golf Club to receive a cheque from the outgoing LEGC Golf Club Captain, Gus Wilson, and Lady Captain, Sharron Myles. Pulmonary Fibrosis NI was the chosen charity for The Lough Erne Golf Club this year, and we are very grateful for the Club’s support. We are looking forward …

Gordon’s Movember 300k Rowing Challenge 2025

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 …

‘Pete the Puffling’s Brave Adventure’ is being translated into French • German • Italian • Spanish • Greek • Dutch • Polish • Swedish • Bulgarian • Romanian • Turkish • Hungarian • Arabic • Chinese • Portuguese

I am absolutely thrilled to share that EU-PFF and Boehringer Ingelheim (BI) have officially signed the agreement for the translation and printing of ‘Pete the Puffling’s Brave Adventure’!  With a total approved budget of almost £40K, Pete will soon be spreading awareness of Pulmonary Fibrosis, and comfort to families affected by Pulmonary Fibrosis, across the world. The book is being …

Barry Curry’s Marathon Run in Memory of his dear friend Paul McBride

Family and friends of the late Paul McBride gathered at Inis Ceithleann Retreat in September 2025 to present Pulmonary Fibrosis NI with a cheque for £6330 raised Barry Currie, who ran the Belfast Marathon in memory of his dear friend Paul. Thank you for your incredible support Barry.

Running for Jimmy

Our very own Ian Simpson (Trustee) recently completed a half marathon in memory of his dear friend Jimmy Balmer. Ian said “Since losing my good friend Jimmy Balmer in 2022 to Pulmonary Fibrosis I have taken on running the Great North Run, Newcastle Upon Tyne to South Shields, on a yearly basis to raise awareness. I will be there again …

Pete the Puffling gets the Royal Seal of Approval!

Clare Donohoe (Charity Co-ordinator) took the opportunity to pass a copy of ‘Pete the Puffling’s Brave Adventure’ to Princess Anne’s Lady in Waiting, when she attended the Garden Party in Hillsborough in September 2025.  Clare received a lovely letter of acknowledgement from Buckingham Palace.

PFNI attend Volunteer Now Events in Fermanagh

Valerie Brown (Ambassador) and Clare Donohoe (Charity Co-ordinator) attended a reception at Fermanagh and Omagh District Council hosted by the Chairman Cllr John McClaughrey. Clare Donohoe and Eileen Connolly attended Fermanagh House to promote the work of PFNI to prospective volunteers.  

Nugent Family Raises £12,387 for PFNI in Loving Memory of Their Mother

Margo Fitzgerald (Ambassador) and Tom McMillan (Chairman) travelled to Keady in Co Armagh on 10/10/25 to meet with the wonderful Nugent family. They had organised two events in memory of their mother and decided that their donation would be given to PFNI. In total they raised £12,387. Margo and Tom spent some time talking to them about the work of …

Driving Awareness Forward: PFNI Launches Two New Charity Vehicles

Pulmonary Fibrosis NI is very proud to announce that our charity purchased two brand new Vauxhall Corsa, on 22nd November 2025. These vehicles will be wrapped with our logos and used to promote the work of PFNI throughout Northern Ireland. They will improve our visibility in the community and enable us to increase awareness about pulmonary fibrosis. In 2026 with …

Our Inspirational Ambassador Valerie Brown

Valerie recently featured in an edition of the Fermanagh Herald stating her recipe for positive ageing which is built on community and friendship.  We are very luck that Valerie is an Ambassador for Pulmonary Fibrosis NI.

‘Pete’ attends Cork City Library’s Children’s Book Festival 2025 

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 …

PFNI Represented at the European Respiratory Patient Academy in Prague – 13th – 16th November

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 …

Teemore Day Centre Coffee Morning Raises £4,489.59 in Memory of Beloved Colleague Eileen McBarron

A wonderful act of generosity and remembrance was marked last week at Teemore Business Complex, where staff and clients of Lakeland Community Care gathered with representatives from Pulmonary Fibrosis Northern Ireland (PFNI) to celebrate the life and legacy of their much-loved colleague, Eileen McBarron. Valerie Brown, (Ambassador for PFNI), Clare Donohoe, Co-ordinator of the charity, and her son Ryan Donohoe, …