About The Pulmonary Fibrosis Trust
Some more information about us
The aim of the Pulmonary Fibrosis Trust is to provide personal support to people affected by Pulmonary Fibrosis, a very debilitating and life-limiting illness. We offer practical, emotional and financial support where there is a need. We also raise awareness of the illness and in particular the challenges people face on a daily basis.
Income and individuals we have helped
The following is a bar chart representation of the income we have received and the people whom we have worked with since our conception in December 2011.
Malcolm Weallans (Life Vice President)
I am a person who was diagnosed with idiopathic pulmonary fibrosis in 2006. In 2009/10 a group of us from the internet decided we wanted to do more to raise awareness of pulmonary fibrosis. Since then I have been heavily involved in helping NICE and NHS-England to write and implement guidelines. In 2012 I helped launch the trust and have seen it grow. I am married for the second time and between us we have 4 children and 8 grandchildren. I am still working 2 days each week as a computer consultant.
Hayley Winship (Events and fundraising’)
I became involved in setting up the trust in 2012 following my experience as a carer for my mother who lived with pulmonary fibrosis. `Being on the 'other side' of the NHS was a daunting experience and I quickly learnt the value of peer support from other people and carers. This experience left me with the drive to do something to make the journey for others living with PF less bumpy. It has been inspiring to see the trust grow beyond all expectations and great to see when we pool our efforts and knowledge, we can ease the burden for others. As well as working voluntarily for the trust, I am still keeping at the day job which is working full time as an independent occupational therapist.
I lost my mum to pulmonary fibrosis in September 2013 and the first contact with the trust was when looking for advice and support.
After finding how little support and information there was for people living with the disease I started to raise awareness by purchasing wristbands in memory of my mum. Donations made at the funeral were given to the trust and I offered to help the trust raise awareness and funds and was appointed a trustee in May 2014 and alongside my nephew Jacob, we continue to raise awareness by maintaining the merchandising side of the trust and attending events with the merchandising.
Glyn Rosser (Merchandising)
I was diagnosed with IPF in 2011 after a bout of pneumonia in 2010 and not getting better ! It was only after further research that I found out that IPF used to be called Cryptogenic Fibrosing Alveolitis. Which had taken my dad back in 1990. I am now retired due to ill health and I have been married 3 times and have got two daughters. I am looking forward to the challenge of helping the Trust make a difference.
Huw Thomas (Secretary)
I learnt about my IPF in April 2014 when I was 57. It still seems to me that it is a little-known disease, insufficiently researched and understood: this must change. I want any newly-diagnosed patients to be able to talk to us - people with experience of IPF and of what it involves. This is a small, trust run by caring people who want to arrange the right support for people who deserve and need help quickly.
Peter Bryce (Chairman)
I was diagnosed with IPF in November 2013. From that point I began to raise money for the Trust, and have since become more involved with the administration. This has included arranging rental of stairlifts, POC, mobility scooters, reclining chairs etc, all funded by the Trust. My aim is to continue the excellent work started by the original Trustees, and do what I can to help and support those suffering with PF. My entire working life was spent in the Finance Department of Vauxhall Motors Ltd, from where i took early retirement in 2010, having completed 42 years service. I am married to Ann, and between us we have 3 children and 7 grandchildren.