Hi all,
Yesterday we launched our IPF report in parliament with MPs, people affected by IPF and health care professionals.
Penny Woods, chief executive of the BLF, has written about the event and why it's so important on our blog.
Let me know what you think.
blog.blf.org.uk/2015/02/lau...
Thanks,
Kevin
Hello Kevin.
Yes, I was there at the launch of the report on Thursday. I was very pleased to be invited. I was diagnosed with IPF in 2005. After going through the normal security screening I made my way to the cafeteria. I was a bit apprehensive as I had to travel to London on my own and didn't know anyone except Ruth Fleming of the BLF. Ruth said she would meet for coffee in the cafeteria and we could all go to the reception room together for the launch. Well, I needn't have worried about company. I had no sooner sat down at one of the tables when I was approached by another IPF sufferer, then another. I must say I was most probably quite conspicuous with my oxygen tank strapped firmly to my back! There was also a whole team from the BLF to welcome us. They soon rounded us up and we were escorted to one of the reception rooms. Well, needless to say there were quite a number of people who had IPF. Some carers and nurses attended as well. There were Doctors and MPs that I chatted to. I did a lot of talking, but also a lot of listening as people shared their stories of their illness with me. I learnt that each story is different, but that it IS a life shortening disease. One thing we all agreed on was that we needed to put ourselves on the map so to speak. We were determined to raise awareness of IPF. Before I knew it, it was time to leave. The room was still buzzing with people chatting. We decided to keep in touch. I made my way to the underground feeling quite uplifted.
Kind regards.
I'm so glad you found the event uplifting. We really needed yourself and the others to tell your story to MPs. We had 47 parliamentarians attend! No wonder the room felt so busy. It was lovely to see you there, Ruth from the BLF
Just to say I sent the letter regarding IPF to my MP, he replied say unfortunately he was unable to attend. However he was fully supportive of The BLF......Mmmm a lot of good that did
Hi Flibberti,
We don't have a full list of MPs yet, but if you want to know if your MP turned up you can email us and we'll try and find out. You can get in touch at blf.org.uk/Page/Contact-us
Thanks,
Kevin
IS THERE ANYONE WHO HAS IPF WHO WRITES ON THE BLOGS
CT scans
IPF news
Katie Price's Mother IPF
Hoping for better days 
