Mission and Values
of the Irish Lung Fibrosis Association

Vision
ILFA’s vision is to enhance the quality of life for individuals and families living with lung fibrosis.

Mission
Our mission is to help individuals and families living with lung fibrosis, and the healthcare staff caring for them by providing evidence-based information, support and practical resources, by advocating for their needs, and contributing to awareness, education and research in Lung Fibrosis.

Values
People are at our heart
• We promote person-centred care and respect and value every individual.
• We promote a positive approach to health and well-being to empower individuals.
• We connect people and help build trusted relationships.

Compassion
• We help, advise, inform and support individual’s choices and decisions.
• We treat everyone professionally and with dignity and empathy.
• We engage with our stakeholders to understand and prioritise their unmet needs.

Advocacy
• We support change, and challenge current practice to improve access to appropriate resources.
• We speak up on people’s behalf and lobby Government for adequately resourced services.
• We collaborate with other patient organisations, alliances, and networks to achieve shared goals.

ILFA Supporting Sustainability

As a lung health charity, ILFA understands the intrinsic link between environmental health and human health, particularly with respect to the connection between climate change and healthy communities. We support the UN Sustainable Development Goals and have aligned our commitments with SDG 3: Good Health and Wellbeing. ILFA aims to promote sustainable choices which improve the lives of patients, families, and the wider community.

Our commitments include:

– Reducing travel-related emissions with virtual events/meetings, and by encouraging staff and contractors to work remotely;

– Where travel is required, using public transport and emission-free travel when possible;

– Reducing the use of paper and printed materials;

– Eliminating single-use plastic at ILFA-sponsored events, in operations, and in promotional materials;

– Advocating with patient organisation alliances for improved health outcomes linked to healthier communities and a more resilient planet;

– Reviewing and regularly updating our sustainability commitments

The CEO and Board of the Irish Lung Fibrosis Association

Chief Executive Officer

ILFA’s CEO is Maureen O’Donell.

Email address: Maureen@ilfa.ie

ILFA Board

ILFA’s Board is made up of trustees who are all volunteers who have personal experience of lung fibrosis, and healthcare professionals with a special interest in lung fibrosis.

Our current Trustees (also called Board Members) are

Eddie Cassidy (Chairman, Company Director)

Liam Galvin (Vice-Chair, Treasurer, Company Director)

Nicola Cassidy (Secretary, Company Director)

Professor Jim Egan (Company Director)

Colin Edwards (Company Director)

Marie McGowan

Lynn Fox

Patricia Jones

Medical Advisor: Dr Kate O’Reilly

The ILFA Board meets approximately every 4 weeks online.

Click here to read more about How ILFA’s Operational Governance works

Our Patrons

ILFA is lucky to have two well known and popular patrons associated with our charity. We are grateful to our patrons for their continued support.

David Gilna, award-winning Dublin actor, screenwriter and playwright, joined ILFA as a patron in 2022. David has performed in The West End, Shakespeare’s Globe and off-Broadway and most recently has finished his debut sell-out tour of America. Known for his award-winning plays “The Unsung Hero”, “My Bedsit Window” and “A Bolt From D’Blue” and films “Ya Clown” and “One For The Ditch”. David co-founded Theatre Under The Big Top with Charles O’Brien at Electric Picnic in 2008, and Lightning Comedy in 2018. He is best known for being struck by lightning and never talking about it. David is honoured to have been chosen as a Patron for ILFA.

Michael Darragh Macauley, Former Dublin GAA star and 8 All Ireland Medal winner became ILFA’S Patron in June 2013. Michael Darragh helped to officially launch the ILFA 2000 Steps A Day Exercise challenge along with the late Senator Feargal Quinn.

It is hoped that Michael Darragh’s strong association and passion with high level sport and exercise will inspire all of us to commit to a more active, healthy, energetic and disciplined lifestyle. Michael Darragh, also a trainded yoga instructor, helped ILFA design and deliver a youga DVD that is specifically aimed at lung fibrosis patients.

Michael Darragh is also a campaign ambassador for “Make life your legacy” and supports the “Opt for Life” call for the introduction of the soft opt out model of organ donation in Ireland.The Human Tissue BIll incorporating an opt-out organ donation system was passed into Irish law in 2024.

History of the Irish Lung Fibrosis Association

ILFA was founded as a not for profit charity in 2002 and was incoporated as a company in 2003 to honour the memory of Fergus Goodbody who died from Lung Fibrosis. ILFA was set up by Nicky Goodbody, the late Terence Moran, Marie Sheridan, and Professor Jim Egan. The primary aims of the Irish Lung Fibrosis Association charity are to provide a source of information and support to people with the condition, and to promote education and suppport research.

ILFA is funded by donations and fundraising activities. The fundraising efforts of our supporters are vitally important to enable ILFA continue our work.

ILFA is registered with the Companies Office and the Charities Regulatory Authority. Our financial accounts are audited every year and submitted to the Companies Office following our annual general meeting, and published on the ILFA website.

Postal address and address for correspondence: ILFA, PO Box 10456, Blackrock, Co. Dublin.

Registered address: Lavery House, Earlsfort Terrace, Dublin 2.

Company Directors: Edward Cassidy, Professor Jim Egan, Liam Galvin, and Nicola Cassidy.

Charity Trustees: Edward Cassidy (Chairman),  Liam Galvin (Vice-Chair, Treasurer), Nicola Cassidy (Secretary), Prof Jim Egan, Michael Geoghegan,  Lynn Fox, Patricia Jones, Marie McGowan, Colin Edwards.

The IRISH LUNG FIBROSIS ASSOCIATION is the national patient organisation for lung fibrosis
Registered charity number 20053437
Company registration number 367940
Charitable exemption number CHY 15462

Our Governance

The Board of the Irish Lung Fibrosis Association (ILFA) is responsible for the running of the charity in a voluntary capacity and to the highest professional standards. All trustees are fully committed to operating the organisation with high standards of good practice and transparency, to delivering the charity’s mission statement, its goals and values, to fulfilling our legal requirements, and maintaining the trust, confidence and support of our members, fundraisers, volunteers, donors and other stakeholders.
We aim to meet our compliance responsibilities by applying the appropriate policies and procedures necessary to ensure that our organisation is run effectively, efficiently, and transparently.

Charities Governance Code: ILFA is fully compliant with the self-assessed Governance Code for community and voluntary organisations as of April 2022.

ILFA is fully compliant with the following voluntary codes, best practice models and statutory obligations:

Charities Regulatory Authority: ILFA is registered with the Charities Regulatory Authority (www.charitiesregulator.ie) and listed on the Charities Regulatory Authority Register of Charities (Charity Registration Number 20053437) in the Republic of Ireland.

The Regulation of Lobbying Act 2015: ILFA is registered on the Register of Lobbying website which is maintained by the Standards Commission (www.lobbying.ie) and provides information to the Standards Commission about our lobbying activities three times a year.

Irish Revenue Commissioners: ILFA is an approved charity with the Irish Revenue Commissioners, registered charity number CHY10456

Good Fundraising Principles: ILFA is compliant with the standards contained within the Statement of Guiding Principles for fundraising (https://www.charitiesinstituteireland.ie/uploads/default/files/5_603292d04d66f.pdf)

Transparent auditing and account reporting: ILFA prepares an annual report and financial statements. We make our annual independently audited accounts available on our website.

Policies: ILFA has developed a range of relevant policies that guide our activities as part of our governance obligations. Existing policies are reviewed regularly and updated as needed. New policies are developed as the need arises. ILFA’s list of policies can be viewed via the link below

Policies of the Irish Lung Fibrosis Association

We welcome your feedback 

ILFA is committed to conducting all our activities and communications to the highest possible standard. We welcome positive and negative feedback. If you would like to contact us with feedback or to make a complaint, please email info@ilfa.ie, call 086 871 5264 or write to ILFA, PO Box 10456, Blackrock, Co. Dublin.

Our Complaints policy 2022is available to download and read here.

Alliances

ILFA is delighted to be part of formal alliances and coalitions with other leading patient organisations who support our work. Collaboration and partnership with other organisations are key priorities for ILFA that enable our charity to embrace opportunities and share insights, expertise, skills, knowledge, and best practice with partners in Ireland, UK, Europe and globally to advance patient care.

ILFA is a member of the following organisations

•  Irish Thoracic Society Interstitial Lung Disease Group – ILFA committee members are members of this working group along with respiratory healthcare professionals and contribute patient perspectives.
•  The Irish Lung Health Alliance – an alliance of respiratory charities in Ireland.
•  The Irish Donor Network – a community of patient organisations dedicated to promoting organ donation and transplantation in Ireland. The group consists of the Alpha One Foundation, Cystic Fibrosis Ireland, the Irish Heart and Lung Transplant Association, COPD Support Ireland, Cystinosis Ireland, the Pulmonary Hypertension Association of Ireland, Liver and ILFA.
•  Care Alliance Ireland – An organisation that provides its members with information and supports for Family Carers, opportunities to collaborate on initiatives including National Carers Week, a multi-agency and multi-disciplinary Family Carer Research Group, and joint policy submissions.
•  Health Research Charities Ireland (HRCI) is the national umbrella organisation of charities active in medical and health research, together representing over 1 million Irish patients. 40 members span many areas of health, including rare diseases, cancer, childhood illnesses, dementia, mental health, and many forms of chronic illness and disability.
•  The European Pulmonary Fibrosis Federation (EU-PFF) which consists of 22 lung fibrosis patient organisations from Europe. ILFA was one of the founding members of the EU-IPFF and Liam Galvin, ILFA Director, is currently the CEO of the EU-IPFF.
•  The Wheel – The national association of community and voluntary organisations, charities and social enterprises.
•  ILFA was previously a member of the European Respiratory Society Taskforce on IPF. This project was of special importance as it was the first time leading IPF experts sought patient and carer perspectives to inform, influence and develop new European guidelines for IPF care. Patients and carers from four countries participated including Ireland, Belgium, Italy and the United Kingdom.
•  European Lung Foundation (ELF) – ILFA committee members have advised the ELF on patient matters, delivered an online learning module on patient perspectives, and spoken at ELF events and conferences.
•  ILFA has collaborated with patientMpower, a technology company based in Dublin, in the development of a phone and tablet app to monitor health parameters for patients with lung fibrosis.

Our Corporate Partners

ILFA is grateful to have established important relationships with corporate organisations who have kindly supported our patient-centred activities over the years including

•  The Central Bank of Ireland
•  Boehringer Ingelheim
•  Roche Products Ireland
•  Air Liquide Healthcare Ireland
•  BOC Healthcare Ireland

We are also grateful to the companies who donated to ILFA in lieu of flowers at the funeral of an employee, colleague or a relative.

Partnering with ILFA

There are many ways your company, business, society, sporting body, school, college, or club can be involved in supporting the work of ILFA. We would be delighted to work with organisations of all sizes seeking a charity partner through corporate social responsibility or simply giving back to society to help raise awareness and valuable funds. In return, we will support your campaign with ILFA branded merchandise and fundraising assistance, and will gratefully acknowledge your support online, in print and via social media to recognise your commitment to charity.

Please consider ILFA as a potential partner for the future and help make a difference. Contact ILFA on 086 871 5264 or email info@ilfa.ie for more information

How funds are spent

•  ILFA was established in 2002 in memory of Fergus Goodbody. The ILFA Board is made up of volunteers who have all been touched by lung fibrosis in some way. Our patrons are Michael Darragh Macauley, David Gilna, Charlie Bird and Andrea Corr.
•  The aims of ILFA are to support Research, Education, Advocacy and Support.
•  Most of our finances come from fundraising activities and donations from our supporters and other donors. All money raised goes towards meeting our aims and helping the patients and families of those affected by lung fibrosis.
•  ILFA funds a patient support line which answers telephone and email enquiries from patients and their families.
•  ILFA hosts regular online activities to support patients including exercise classes, Sing Strong classes, and patient support group meetings.
•  ILFA holds two Patient Information Days annually. Invited speakers give presentations to patients and their families about the medical, social, and practical aspects of living with lung fibrosis. The Patient Information Days are a valuable opportunity for patients with lung fibrosis and their families to meet with each other. The events are advertised online and in the local and national press. There are other webinars as well throughout the year.
•  The Inaugural Fergus Goodbody Lecture was held in 2010 and an international expert in Respiratory Medicine was invited to Dublin to present a lecture on recent advances in lung fibrosis to medical, nursing, allied healthcare professionals and research staff. This important educational activitiy has become a regular event for ILFA and takes place every 2 years.
•  ILFA provides educational opportunities and bursaries to healthcare professionals to learn more about lung fibrosis in order to assist their patients. ILFA has funded Cognitive Behavioural Therapy training and attendance at conferences for healthcare professionals.
•  ILFA invests in research projects on lung fibrosis and conducts research surveys to understand the challenges faced by patients and caregivers.
•  ILFA engages with our stakeholders to shape our services through World Cafe Events.
•  ILFA regularly advocates on behalf of patients with the Irish Government and the HSE.
•  ILFA produces several publications including a number of ILFA Newsletters each year, the Directory of Services for Lung Fibrosis, and Patient Information Leaflets.
•  ILFA provides free exercise resources and practical living aids to patients, respiratory nurses and physiotherapists.
• Since 2013, ILFA has managed the 2000 Steps Day Exercise Programme for Lung Fibrosis patients. Patients are provided with a free exercise pack including a fan, theraband, and a medical grade pedometer.
• In 2015, ILFA produced its first Exercise DVD for Lung Fibrosis Patients followed in 2018 by a Yoga DVD. These DVDs were subsequently moved to ILFA’s YouTube channel. In 2024 HSE National Lottery funding has allowed ILFA to produce a strength and conditioning video which is also available on YouTube.
•  ILFA is registered with www.justgiving.com for online donations and this involves an annual charge.
•  ILFA supply merchandise including t-shirts, vests, and balloons and other promotional items to fundraisers.
•  Other funds go toward administrative operations.

Finance and Accounts

ILFA is registered with the Companies Office and the Charities Regulatory Authority.
Our financial accounts are audited every year by Whiteside Cullinan & Co. Accountants and submitted to the Companies Office and the Charities Regulatory Authority following our annual general meeting. ILFA’s financial year runs from 1st January to 31st December inclusive (as from 2019).

ILFA’s Financial Statements provide details of the charity’s income and expenditure for the finanical year.

ILFA’s Annual Reports are available here.

All our finance comes from fundraising activities, and individual and corporate donations. To learn more about our fundraising activities please visit our News and Events and Fundraising pages.

ILFA Customer Charter

The stakeholders of the Irish Lung Fibrosis Association include

ILFA Chief Executive Officer

The Board of ILFA

Administrative support

Patients diagnosed with lung fibrosis

Caregivers of patients diagnosed with lung fibrosis

Volunteers

Fundraisers

Donors and funders

Healthcare professionals

Pharmcaeutical and Oxygen Industry representatives

ILFA supporters

Corporate partners

Business partners

Contractors

Regulators

Government agencies

Alliances with other charities

The public

National Awards

The Irish Lung Fibrosis Association has recevied a number of prestigious national awards for our work over the years.

Dancing for Lung Fibrosis

The Irish Lung Fibrosis Association project entitled “Dancing for health and wellbeing: A feasibility study to examine the health impacts of dancing for lung fibrosis patients” won the Irish Healthcare Award 2023 for Patient Organisation Group of the Year.

ILFA’s Online Exercise Programme

ILFA won the 2022 Irish Healthcare Award for the Best Patient Organisation Project for the “ILFA’s online exercise programme to meet the unmet healthcare needs of pulmonary fibrosis patients during Covid-19 and beyond”.

ILFA’s 2000 Steps Challenge

ILFA won the 2014 Irish Healthcare Award for the Best Patient Organisation Project of the Year for the “ILFA 2000 Steps a Day Exercise Challenge for Lung Fibrosis Patients”.

Pictured are Pat Campion of sponsors Lundbeck presenting the award for Patient Organisation Project of the Year to Nicola Cassidy and Irene Byrne.

Love Your Lungs

In 2016, Roche Products Ireland in partnership with ILFA, COPD Support Ireland, the Asthma Society and Edelman won the 2016 Irish Healthcare Award for the Best Pharmaceutical

Education Project.

Pictured are Erica White (representing COPD Support Ireland) with Dolores Williams and Nicola Cassidy from ILFA.

Patient Charter for Idiopathic Pulmonary Fibrosis

ILFA’s National Patient Charter for Idiopathic Pulmonary Fibrosis won the 2016 Plain English Award for Best Patient Information Leaflet from the National Adult Literacy Agency.

Pictured are Anne Casey, Matt Cullen and Nicola Cassidy receiving the award from  Declan Black, Mason Hayes & Curran, who sponsored the National Adult Literacy Agency’s Plain English awards.

ILFA’S World Café on Palliative Care and Planning for the Future

In 2019, ILFA’s project entitled “World Café on Palliative Care and Planning for the Future with Lung Fibrosis” was shortlisted in the in the highly competitive Best Patient Organisation Project of the Year category and received a commendation.

Pictured are Gemma O’Dowd, Nicola Cassidy and Dr Anne Marie Russell.

ILFA’s Yoga DVD for Lung Fibrosis Patients was shortlisted for Patient Lifestyle Education Project of the Year at the 2019 Irish Healthcare Awards.

ILFA’s World Cafe on Pulmonary Fibrosis Services in Ireland during Covid-19 and Beyond was shortlisted for the Patient Organisation Project of the Year at the 2021 Irish Healthcare Awards.

Denise Cassidy Memorial Prize for Excellence in Healthcare

The Denise Cassidy Memorial Award recognises and celebrates the kindness, compassion and humanity of a hospital healthcare worker to a lung fibrosis patient or their family. Every two years, patients and carers are invited to nominate a person who showed you or your loved one a special act of kindness that helped you cope with your illness better.

Read about the winners of this special pize here.