“Let’s Talk Breathing Techniques” 27th July 2022
Join Eimear Bell, Respiratory physiotherapist, for an online session entitled “Let’s Talk Breathing Techniques” for pulmonary fibrosis patients.
Eimear will give a presentation on breathing techniques that will be followed by a Questions and Answers session.
Please submit any questions you may have in advance and Eimear will do her best to answer them in the allotted time. The meeting will take place via Zoom and we can provide you with assistance if necessary.
Please email info@ilfa.ie or call 086 871 5264 or 086 057 0310 to register to attend.
ILFA_Newsletter_Summer2022_website
Public, Patient and Carer Involvement in Research
Patient and public involvement (PPI) in research is defined by the National Institute for Health Research as “Research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”.
Public, patient, and carer Involvement in research is becoming increasingly important in research planning, development, and design, and is now considered best practice. Actively involving patients and the public in research activities ensures that the voice of patients and other interested parties is included to influence quality research. This results in research activities that are enhanced, better designed, with clearer and more relevant outcomes, and a faster uptake of new evidence.
ILFA is committed to PPI to ensure patients’ and carers’ perspectives and priorities influence our aims/mission, values, activities, advocacy, and research. This year ILFA would like to set up a PPI Research Advisory Group to inform our research activities, enhance collaborations with researchers and support and influence research relating to lung fibrosis. Ideally, we would like to recruit 15 members.
Role of the PPI Advisory Group
The role of the PPI advisory group is to contribute their perspectives to ILFA’s research activities, to engage with research proposals. meaningfully and actively collaborate in the governance, priority setting and conduct of research, as well as in summarising, distributing, sharing results and knowledge.
Responsibilities
- The group will be asked to meet 2-3 times a year (virtual meetings to start with).
- A commitment to adequate preparation for meetings is required. Members will be asked to read and consider any documents sent in advance of the meeting.
- Members are asked to engage in active, meaningful, and respectful collaboration with other members of the group, ILFA Board Members and research investigators if necessary.
ILFA has prepared Terms of Reference for the PPI Advisory Group that are available on request. If you are interested in joining the PPI Advisory Group, please contact ILFA by the end of June 2022.
Email info@ilfa.ie or call 086 871 5264
Email info@ilfa.ie for an application form.
ILFA is delighted to announce a new, free 
yoga course for lung fibrosis patients and carers delivered by Michael Darragh Macauley, who is a qualified yogi.
The 8-week programme will take place every Wednesday at 10.30am starting on 22nd June.
The classes will include breathing and stretching exercises, physical moves and meditations carried out in standing and seated positions. Time will be allocated at the end of each session for peer support and a chat.
This exercise initiative is supported with a much-valued grant from Age & Opportunity and Sports Ireland.
To register to attend the course, please email info@ilfa.ie or call 086 871 5264 by Monday 20th June 2022.
Best of luck and thank you to the ladies who have signed up to take part and fundraise for ILFA. We’re very grateful for your support.
ILFA will host an online support group meeting on Wednesday 8th June at 3pm via Zoom.
We will use breakout rooms for people to meet in small groups & have a friendly chat over a cuppa.
We hope you can join us.
Please email info@ilfa.ie or call 086 871 5264 to register in advance.
The Irish Lung Fibrosis Association will host a “Let’s Talk Oxygen” Questions and Answers session with Patricia Davis, Clinical Nurse Specialist, Respiratory Integrated Care, on Friday 29th April at 11am via Zoom.
Please submit questions and register in advance by emailing info@ilfa.ie or calling 086 871 5264
Dancing for Pulmonary Fibrosis is a new dance exercise and wellness initiative from ILFA in collaboration with Dr. Vikram Niranjan, UCD School of Public Health, Physiotherapy and Sports Science, and Tracey Barnes, Dancing for Health CIC, UK.
Classes will take place every Tuesday at 2pm via Zoom from 26th April until 14th June. Classes will last 75 minutes and will include seated/standing exercises to music and a social component.
If you would like to take part in the classes please email info@ilfa.ie or call 086 871 5264 by15th April.
“Dancing for Health and wellbeing: A feasibility study of examining health impacts of dancing among idiopathic lung fibrosis patients” is funded by an Irish Research Council New Foundation 2021 Award.
The Irish Lung Fibrosis Association is thrilled to announce that we’ve joined Instagram!!!
Please follow our page @ILFA_Ireland and help spread the word.
Let’s continue to raise more awareness about Lung Fibrosis 
