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. I am married to Ann, and between us we have 3 children and 7 grandchildren.
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.
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 PF and of what it involves. The Trust is run by caring people who want to arrange the right support for people who deserve and need help quickly.
Ronald Flewett (Spokesperson)
I was diagnosed with IPF in April 2014, and since then I have been very active in raising awareness of this disease by working very closely with the British Lung Foundation, attending Houses of Parliament, meeting with MEPs at the European Parliament and giving several talks to health care professionals. I have also worked with several Pharmaceutical companies and have attended several meetings where I have talked to their staff about the disease and raising awareness. As well as this I have also attended NICE Meetings as a patient expert for Pirfenidone.
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.
Robert Couchman (Chief Technology Officer)
I joined the Trust in 2017 and became a Trustee and CTO in 2018. I joined the Trust to offer my technological expertise and to help the Trust move forward.
Lauren Couchman (Merchandise and Social Media)
I became involved with the Trust in 2017 and was appointed Trustee in 2018. My step-dad Ron Flewett has IPF and I wanted to do everything to help sufferers and their families as well as raise awareness. I look after merchandise for the Trust as well as Social Media.