A message from our Chairman, Mike Bray
What a year we have had! We set out early in 2013 to establish Action for Pulmonary Fibrosis as a new charity focusing on idiopathic pulmonary fibrosis with the aims of raising awareness of this devastating disease, helping IPF patients and their families and raising funds for research.
By the summer of last year we had registered and launched the charity.
One of our main activities during the year has been assisting support groups and in particular helping to set up new groups. Until last year there were only around six groups across the UK – now there are fifteen and the number is growing.
All the evidence suggests that patients and family members find support groups of great help. It enables them to meet with others in the same situation, to learn more about the disease and how best they can manage it and just enjoy a cup of tea and a chat.
Myself and other trustees have had the pleasure of visiting a number of groups during the year, including Norfolk & Norwich, Llandough, Manchester, Hull & East Yorkshire, Birmingham and Papworth, which is the group of which I am a member.
We also engage with patients and family members through social media which is so helpful as a contact for people who are unable to attend a support group or who don’t have one near to them yet.
We will continue our work in helping to establish more groups so that eventually anyone who wishes to attend a group will have the opportunity. We are pleased to have received some external funding to help with this work.
Our other main activity during our first year has been to raise awareness through social media, promotional materials and by giving presentations at various events. This included speaking to a parliamentary group at Westminster and involvement in the European Patient Advocacy Group which culminated in the production of a European IPF Patient Charter presented to the European Parliament during IPF Week this year.
We also took the opportunity of including a letter and poster in an Information Pack to 10,000 GP practices this month.
We have plans for the coming year including undertaking projects to enhance the quality of life for patients through improvements in the provision of pulmonary rehab and assessment for oxygen therapy, amongst others.
It would have been impossible to do all of this without the funds that have been raised by all of our many supporters across the country. We have received donations large and small from patients and family members undertaking a wide variety of challenges from events such as the three peaks challenge to a supper party, cake stalls and children making and selling loom band bracelets.
We are constantly amazed at the initiatives that our fundraisers undertake.
To all – a huge thank you.
I and the other trustees look forward to another rewarding and busy period ahead. I hope you enjoy reading more about our recent activities and those that are planned for the coming year.