Thank You West Kerry Tractor Run!

The West Kerry Tractor run has once again provided necessary funding to support a small charity with big ambitions.  

The Irish Lung Fibrosis Association (ILFA) is a national patient representative organisation, originally founded in 2002. For more than 20 years, ILFA has provided education and direct supports for patients and the lung fibrosis community. ILFA also advocates on behalf of patients for more equitable access to healthcare services and promotes research into the causes and treatments of lung fibrosis.  

Lung fibrosis (or pulmonary fibrosis) is a progressive, life-limiting disease characterised by the thickening and scarring of lung tissue, leading to decreased lung function over time. The disease usually develops in adults over 60 and causes breathlessness, fatigue, and chronic cough that severely affects the patient’s quality of life. As of today, there is no cure. 

In recent years it’s believed that lung fibrosis prevalence is rising in Ireland. Data from the Irish Thoracic Society indicates that up to 5,000 people in Ireland may have lung fibrosis but the real figure could be higher. It’s impossible to know the exact number as there is no disease registry in Ireland like there would be in many other countries.   

Lung fibrosis patients in Ireland face a battle on two fronts, against the progression of their disease and against an inequitable healthcare system that favours patients living in major cities with the financial resources to fund the high cost of ongoing disease management. Patient care within the public system is concentrated into eight specialist centres, most of which are in Dublin, forcing patients in rural areas to often travel great distances. Many have neither the physical strength nor the financial resources to do so.  

ILFA aims to level the playing field in this inequitable system through its advocacy for a Clinical Programme which would ensure every patient in Ireland, regardless of location or financial resources would receive the care they need in their community. A Clinical Programme is our ultimate goal, but we’re not waiting for that to arrive. While we advocate for it, ILFA also advocates for immediate priorities like patient access to pulmonary rehabilitation, the establishment of a disease registry, and tax rebates to offset the high cost of care. Our advocacy work was recognised by the then Minister for Health, Stephen Donnelly with a 500,000 euro allocation in Budget 2025. But as of today, with the HSE in the midst of a chaotic transition to regional structures, that funding, earmarked for lung fibrosis, hangs in limbo. 

Which means it is even more important for organisations like ILFA to exist. ILFA is a small charity funded almost entirely by donations; we receive less than 4 percent of our annual funding from the State.  We depend on the generous donations of individuals and communities, just like those that showed up on that stormy day in November to raise critical funds for us. 

We are deeply grateful to the organisers of the West Kerry Tractor Run, the drivers and supporters like the Marina Inn for their steadfast support. For the last six years, proceeds from this event have funded critical ILFA programmes like patient information and exercise packs, our patient support line, exercise classes, informational webinars, bursaries for medical professionals, and our advocacy work. We are truly honoured to be chosen as a beneficiary again this year and remain deeply grateful for the enormous generosity of the West Kerry community.