Upcoming Events from ILFA

See our Latest News and Events Section for more information

Festive Dance Class Christmas jumper, snowman and Santa Claus

Join ILFA for an online Festive Dance Class on Tuesday December 20th at 4pm with choreographer Tracey Barnes and members of the Dancing for IPF Team. All are welcome.
Don’t forget to wear your Christmas jumper and hat!
Register in advance by emailing info@ilfa.ie or calling 086 871 5264

Online Yoga Classes

The Irish Lung Fibrosis Association (ILFA) is delighted to announce a new 6-week series of online yoga classes with Michael Darragh Macauley.
The classes will start on Friday 11th November at 10.30am via Zoom.
Please register in advance to join the class by emailing info@ilfa.ie or calling 086 871 5264
The class is free to all members registered with ILFA.
Namaste!

ILFA Patient Information Day

The next ILFA Patient Information Day will take place virtually on Saturday 5 November 2022 from 11am to 1pm.
Our speakers include
Dr Liam Chawke – Respiratory Consultant, Kerry University Hospital
Lindsay Browne – Respiratory Advanced Nurse Practitioner, St Vincent’s University Hospital
Eimear Bell – Respiratory Physiotherapist
Carita Bramhill – PHD Researcher, Trinity College Dublin
Register via the Zoom link below or call ILFA on 086 871 5264 or email info@ilfa.ie.
https://us06web.zoom.us/webinar/register/WN_PX7t6VjWSl2Vk63TxUIxWw

“Let’s Talk Oxygen for Pulmonary Fibrosis”Oxygen tank

“Let’s Talk Oxygen for Pulmonary Fibrosis” with Lindsay Browne, Respiratory Advanced Nurse Practitioner at St Vincent’s University Hospital, will take place on Wednesday 9th November 2022 @ 4pm via Zoom.
Please register in advance by calling 086 871 5264 or emailing info@ilfa.ie
Questions can be submitted in advance via email.

 

“Let’s Talk Unmet Needs for Lung Fibrosis Patients”

Post it note saying "Let's Talk"

Patients and carers are invited to ILFA’s online discussion entitled “Let’s Talk Unmet Needs for Lung Fibrosis Patients” with team members from The BioInnovate Program based in University of Galway. The program takes a ‘Needs Led Innovation’ approach (process) to create novel healthcare solutions to previously unmet and unrecognised problems.
 
The 2022 Respiratory and Anaesthesia Team come from clinical, engineering and business backgrounds. The team is keen to speak to patients on the challenges of their condition. The team hopes to identify a broad range of needs which could have new improved solutions for patients and users developed.
 
Join us online on Monday 24th October from 4-5pm to discuss your specific challenges or unmet needs from diagnosis, treatment or day to day living with your condition. Do you face
-Challenges with medication?
-Oxygen support?
-Challenging symptoms?
-Specific support areas / needs – things you find that help but are hard to get
 
If you would like to take part, please register in advance by emailing support@ilfa.ie

 

ILFA Service of Prayer and Reflection

Stained glass

The ILFA Service of Prayer and Reflection will take place at Our Lady of Mount Carmel Church, Whitefriar St, 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. Please let us know if you plan to join us so we can organise numbers for some light refreshments afterwards.

During the service, we will light candles for those patients whose names have been submitted to ILFA by family members. Please email info@ilfa.ie or call 086 871 5264 if you would like your loved one remembered.

The service will be live-streamed and available to watch via the church website www.whitefriarstreetchurch.ie, for those who cannot attend the church in person.

If you cannot attend, we encourage ILFA members to come together virtually as a community and light a candle in their home at 8pm on the evening of Saturday 15th October to support or remember loved ones affected by lung fibrosis. You can send your photos to info@ilfa.ie if you would like to share your images.

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

 

 

Sing Strong for Pulmonary Fibrosis

The Irish Lung Fibrosis Association (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 2022 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 in advance.

 

ILFA Patient and Carer Survey

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.

 

“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.

“Let’s Talk Breathing Techniques”

Inhale, exhale words written in sand

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 & 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.

 

 

Let’s Talk OxygenOxygen tank

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

 

2000 Steps Extra for ILFA!

ILFA is delighted to announce that our annual event “Easter Monday 2000 Steps Extra for ILFA” will take place virtually on Monday 18th April, 2022. We need patients, carers, family members, healthcare professionals, industry supporters to participate and commit to taking at least an Extra 2000 Steps (1 mile more) to raise awareness of pulmonary fibrosis and raise funds to support ILFA’s work.

You can take part from anywhere – in your garden, indoors from your home, outdoors etc. The important goal is to step it out for your health!

Please contact ILFA if you would like to sign up for this walking/running challenge and we will send you a special fundraising pack. Remember to take a photo and log your step count with us! We’ll have fun counting the total steps taken to see how far we reach!
Contact ILFA on 086 871 5264 or email info@ilfa.ie for more information
Donations can be made via https://ilfa.ie/donate/

 

Dancing for Pulmonary Fibrosis

ILFA is delighted to announce a new donline ance exercise and wellness initiative
in collaboration with Dr. Vikram Niranjan, UCD School of Public Health, Physiotherapy and Sports Science, and Tracey Barnes, Dancing for Health CIC, UK.
… Want to learn more about this exciting and innovative programme? Join us for a “Let’s Talk Dancing for Pulmonary Fibrosis” session on Tuesday 5 April 2022 @ 3.15pm via Zoom. Please email info@ilfa.ie or call 086 871 5264 to register in advance.
“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.

 

ILFA’s next Patient Information Day

Webinar announcement

The next Patient Information Day will take place online on Saturday 12th March 2022 from 11am until 1pm. The meeting will take place using the Zoom online platform. If you would like help using Zoom, please contact us in advance and we can provide you with support.

Our speakers will be confirmed nearer to the time and announced on the website (www.ilfa.ie), and Facebook and Twitter pages. Please register with ILFA in advance to attend this meeting by calling 086 871 5264 or emailing info@ilfa.ie

 

Weekly Online Exercise Classes with ILFA

Man exercising using tins of food as weights

ILFA’s online exercise classes for lung fibrosis patients take place weekly via Zoom. The classes are free of charge to all lung fibrosis patients who are registered as members with ILFA. The classes usually take place at 11am and are led by a Respiratory Physiotherapist.

Please register in advance to receive safety information and advice for the classes. Email info@ilfa.ie or call 086 871 5264 to join the class. We look forward to seeing you!

 

Exercise is the Best Medicine

Exercise is vitally important for lung fibrosis patients and ILFA’s exercise resources encourage you to exercise safely while taking your health limitations into account.
Speak with your respiratory nurse specialist, physiotherapist, and doctor for more information about the benefits of exercise and how to get started.

 

ILFA’s Exercise Resources

Cover of ILFA exercise DVD

Some of ILFA’s exercise resources are included below. These are available free of charge to lung fibrosis patients and healthcare professionals working in respiratoy medicine. Please contact ILFA to request our free resources.

Online Exercise Classes with ILFA

Man exercising using tins of food as weights

ILFA’s online exercise classes for lung fibrosis patients take place weekly via Zoom. The classes are free of charge to all lung fibrosis patients who are registered as members with ILFA. The classes usually take place at 11am and are led by a Respiratory Physiotherapist. Please register in advance to receive safety information and advice for the classes. Email info@ilfa.ie or call 086 871 5264 to join the class. We look forward to seeing you!

Click here if you would like to know more about using Zoom. If you have any questions about using Zoom to join the classes, please get in touch and we will talk you through the process.

Watch the ILFA Videos

ILFA Exercise Video for Lung Fibrosis Patients

 

ILFA Yoga Video for Lung Fibrosis Patients

ILFA Exercise Video in collaboration with University Hospital Limerick

 

Walking is an ideal exercise for Lung Fibrosis patientsTwo women walking

The 2000 Steps a Day Challenge was specifically designed for Lung Fibrosis patients. This challenge aims to help you achieve your best level of fitness and wellbeing while considering your limitations and oxygen requirements. The 2000 Steps a Day Challenge was devised by Ms. Irene Byrne, Senior Physiotherapist with the Heart and Lung Transplant Unit at the Mater University Hospital Dublin and developed with ILFA.

 

The ILFA 2000 Steps a Day walking pack contains

We hope that you will enjoy this exercise challenge and it will motivate you to incorporate an extra 2000 steps into your daily routine. We want you to use the programme to help kick start, improve and maintain your level of fitness.

 

How to order your 2000 Steps Walking Pack

Please contact ILFA to request your 2000 Steps a Day walking pack by writing to ILFA, PO Box 10456, Blackrock Co. Dublin via email info@ilfa.ie or by calling 086 871 5264.
All of ILFA’s resources are provided free of charge to lung fibrosis patients registered with ILFA and to healthcare professionals working in respiratory medicine.

 

The History of ILFA’s 2000 Steps a Day Walking Challenge

The 2000 Steps a Day Challenge was devised by Ms. Irene Byrne, Senior Physiotherapist with the Heart and Lung Transplant Unit at the Mater University Hospital Dublin and developed with ILFA. In 2014, ILFA’s 2000 Steps A Day Challenge won the Irish Healthcare Award for the Best Patient Organisation Project of the Year.

You can read more about ILFA’s award winning exercise initiative here.

 

Please note that the ILFA 2000 Steps a Day Challenge is the property of ILFA and cannot be copied or reproduced without permission. For further information, please email info@ilfa.ie or
call 086 871 5264

Peer support and talking to others is important and may help and reassure you that you are not alone.

The ILFA Support Group network puts patients and carers in touch with each other to share their stories, experiences, and tips for living well with lung fibrosis.

Click here to see a list of patient support groups

 

 

 

 

Be Inspired by ILFA’s Tip of the Week and Quote of the Week

Each week ILFA features a new Tip of the Week and Quote of the Week to help and inspire our members.

We hope you will benefit from these tips and inspiring words.

 

Tip of the week

Exercise, exercise, exercise!!!

Exercise is as important as medication. You should prioritise exercise as well as following your doctor’s instructions when taking medicine and using oxygen.
Daily exercise will help to keep your muscles strong and your lungs working to the best of their capacity. The ILFA 2000 Steps a Day exercise challenge is designed specifically for lung fibrosis patients taking their limitations into account. Email info@ilfa.ie or call 086 057 0310 or 086 871 5264 to request your 2000 Steps Exercise Pack.

 

Quote of the weekHuman hands making shape of heart

“Once you choose hope, anything’s possible.” Christopher Reeve

 

Mindfulness and Mental Health Resources

The following websites may be useful to help you support your mental wellbeing.Human hands making shape of heart

 

Below is a list of counselling and mental health support services available, including supports for different age groups, mobile apps, phone and online resources.

If you are struggling with increased anxiety, feeling depressed or have suicidal thoughts, please seek help and contact your GP or go to your local Emergency Department for help.