Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
Steve Jones, Action for Pulmonary Fibrosis Chair, was slowly dying from idiopathic pulmonary fibrosis until his lung transplant in 2016. In 2017, with 5 years life expectancy (he’s on his 6th year post transplant and defying doctors again) against all odds, through Covid Steve has used his position as Chair to transform the world for people living with and affected by PF. He lives every day like it’s his last. Steve has overseen the growth of APF (founded 2013) through Covid, ensuring more people affected by PF have access to expert information and support. He has been fundamental to APF’s expansion into research to find a cure. John, a fellow transplant patient says: “Without Steve - his positivity, energy and commitment - I can honestly say I would not be here today. I owe Steve so much.”
PF is a devastating condition for anyone to face but as the main carer for her husband, Dee faced this challenge on a daily basis, whilst supporting Action for Pulmonary Fibrosis (APF) as a volunteer, working in the knowledge that her husband had a terminal illness.
Dee is a passionate advocate for people living with PF and her desperate personal circumstances did not stop her from supporting the work of APF- campaigning for early access to supportive/palliative care and highlighting the difference that it can make in improving quality of life.
Working through her own personal battles, Dee has brought a warmth and openness to the work of APF and has shared the highs and lows of her husband’s journey bringing her palliative care background and personal experience to inform and educate and help develop APF into a leading charity in the fight to find a cure for PF.
When Tom’s wife Una was diagnosed with pulmonary fibrosis, the despair and desperation that often hits everyone with a terminal illness, soon turned to action and hope after he became aware that Northern Ireland has the highest prevalence of idiopathic pulmonary fibrosis in the UK, with an estimated 1,200 sufferers.
Despite being Una's carer, Tom became the single most influential campaigner and supporter of people affected by pulmonary fibrosis in NI. Tom fundraises, provides emotional and practical support to families affected by this dreadful disease and campaigns for investment into local services.
Louise Wright, CEO at APF says; 'Tom is an absolute inspiration to us all. Nothing is ever too much trouble. He's calm, insightful and highly motivated. He's made a real difference to hundreds of peoples lives in NI and beyond. We are incredibly thankful for his support.'
We are so proud to be able to showcase just some of the incredible people who are dedicated to making life with pulmonary fibrosis better for all.