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. The next step is to become a fully registered charity with the Charity Commission; our application is with them. It is now our intention to work to provide a respite facility for PF sufferers and their families in Northern Ireland.
We are now members of NICVA who are connecting with over 1000 organisations working in the voluntary and community sector in Northern Ireland.
We have appointed 4 new Directors ( Chairman Tom McMillan, Secretary Mrs Judith Byrne, Mrs Pat Gorman and Mrs Una McMillan), to run our charity, and an honorary President (Dr Eoin Murtagh).
We have also appointed Ambassadors from around Northern Ireland (Clare Donohoe, Karen Crawford, Shauna Lynch, Janet Bamford, Royce Balmer and Donna Cooney). We are delighted to have Julie Hesmondhalgh as our first Patron of our charity.
The Norther Trust Pulmonary Fibrosis Support Group was set up in 2015 by Dr. Eoin Murtagh (Respiratory Consultant and President of our support group) and Pat Gorman (Respiratory Nurse Specialist); both are based at Antrim Area Hospital and have since been joined by Dr. Paul Minnis (Respiratory Consultant). Since then the support group has grown to offer help, support and guidance to people from all over N Ireland. We work closely with the registered charity (Action for pulmonary Fibrosis); working with them to raise funds for research into finding a cure for pulmonary fibrosis.
The Northern Trust Pulmonary Fibrosis Support Group would normally meet at Fern House in Antrim Area Hospital but since the COVID-19 pandemic we have been meeting virtually every two weeks via Zoom.
The group is very proud of its achievements and fund raising activities towards research, since its set up. We have increased awareness about pulmonary fibrosis in N Ireland and take part in many awareness campaigns; we have raised over £23,000 for research, in the last two years.
We are members of the European EU-IPFF and are involved in Europe wide working groups to help patients and carers. Through Action for Pulmonary Fibrosis we form part of a network of over 70 UK wide support groups, sharing information and support. Currently members of our support group are taking part in a working group looking at a new lung health strategy for N Ireland. We are also part of the James Lind Alliance working group working with medical professional, patients and carers, looking at ways of providing a better future for PF patients and carers.
The support group is patient and carer focused with clinications, patients and carers working together. This is your support group and we are here to:
- To provide support to patients and their families and carers and to improve their quality of life
- To provide practical support to patients living and coping with ILD, day to day
- To undertake targeted awareness raising of ILD, amongst the medical profession, decision-makers and the wider public
- To support research into improved outcomes and greater understanding of ILD
- To provide a supportive place to come together to chat and socialise with a community who can understand what it is like to live with ILD
If you have someone in your family suffering from PF or are a sufferer and think that we could help you, please do not hesitate to contact us using the contact form provided.