Sing Strong for Pulmonary Fibrosis

ILFA is pleased to announce the start of a new ‘Sing Strong for Pulmonary Fibrosis’ class with Ciara Meade, Choir Mistress,

The classes will take place every Wednesday at 12.30pm starting on 21 September for 12 weeks. The online class is free of charge to lung fibrosis patients registered with ILFA. No singing experience or even a good singing voice needed.

All are welcome to this fun, sociable and beneficial class.

Email info@ilfa.ie to register.

The ILFA Service of Prayer and Reflection will take place at Our Lady of Mount Carmel
Church, Whitefriar St, Stained glass window

Aungier Street, Dublin 2 on Saturday 15th October at 4pm. We are delighted to return to an in-person event and look forward to welcoming our guests. The service may also be live-streamed (to be confirmed).

During the service, we will remember those who have been lost to lung fibrosis with the lighting of candles. If you would like your family member included on the remembrance list, please email info@ilfa.ie with the person’s name and the year they passed away if known. Please note that all names must be submitted before 1st October 2022 and we will not automatically include names from previous years.

We hope you will join us in Dublin for this uplifting community event.

“Let’s Talk PPI”

Join ILFA on Monday 18th July at 4pm for our “Let’s Talk PPI” information session.

PPI in research means research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

ILFA is committed to PPI to ensure patients’ and carers’ perspectives and priorities influence our research. This year ILFA plans 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.

Dr Michelle Flood and Dr Chiara DeSanti from the School of Pharmacy and Biomolecular Sciences at the Royal College of Surgeons of Ireland will join us to discuss PPI for lung fibrosis patients and asnwer questions.

Email info@ilfa.ie or call 086 871 5264 to join.

All are welcome.

We need your help please … Computer screen announcing an online survey

ILFA has developed a Patient and Carer Survey to understand the physical, emotional, and financial impact of living with Lung Fibrosis in 2022. The intended audiences for this survey include ILFA members who are Lung Fibrosis patients, those who have received a lung transplant for Lung Fibrosis, as well as caregivers to people diagnosed with Lung Fibrosis. The survey takes about 10 minutes to complete and there is a chance of winning a One 4 All voucher (€100 for the winner and €50 for the runner-up).

ILFA will use this anonymous information to campaign for greater awareness of Lung Fibrosis. Please complete the survey via this link by July 12th 2022 https://bit.ly/ilfa22

Alternatively you can call 086 871 5264 if assistance is needed.

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

Medical technology concept

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

The Irish Lung Fibrosis Association is pleased to announce our educational bursaries to study Cognitive Behavioural Therapy (CBT) in the Autumn.

Bursaries are availble to respiratory healthcare professionals working with lung fibrosis patients in Ireland.
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.

The Vhi Women’s Mini Marathon will take place in Dublin on Sunday 5th June at 2pm.

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.