Taunton.

[Mavary]

We went to Taunton to Meet The Experts for IPF. We had a lovely day and The BLF started it all off with their talk. They also introduced everyone. We had Drs speak, Professors and even a Dr from the transplant team. We were fed well and had lots of tea coffee and juice. All in all it was a very interesting day which was very informative. My Thanks To The BLF.

[peege]

Did you see Dall05 ???

[Mavary in reply to peege]

Apparently he was behind me but we didn't know until we came back on here.

[dall05]

I was there peeg with my daughter and we also found it very informative. We sat on the same table as Mark from BLF who did a talk on benifits which was very interesting. The meeting was very well organised and run very well.

It was an early start for us and I'm feeling pretty tired today probably from the driving as the conditions were pretty awful.

If anyone has the chance to go to one of these meetings I would recommend it, I believe there is another at Gatwick coming up soon.

Tony

[KingoftheCocktails in reply to dall05]

What did you learn about IPF

[Mavary in reply to KingoftheCocktails]

No different than we already knew. However I just read an article my son texted to me about a University in America. ( Yale University ) it looks like they may have found a treatment. It is about shutting off the gene that causes the overgrowth that forms scar tissue. I think that is right. They have to find a way to administer it. They think maybe to inhale it. It could be a way off yet but gives a little bit of hope.

[Annieo in reply to Mavary]

I would love to read this article Can you give the reference .

[Mavary in reply to Annieo]

Hi Annieo. It was St Louise University and the ref no: is wwwfacebook.com/I/IAQGd-BSI... I hope I have got it right. If not let me know and I will get my son to show me how to send it to you as I copied it from scratch. It does give a bit of hope though. It just depends if it will be on the market quick enough for a lot of people.

[Annieo in reply to Mavary]

Thanks a lot I read a lot of research papers and even more abstracts and yes it does give you hope

[Hidden]

Good to hear glad you found it interesting TAD xx

[nannyb]

So glad you had a good day, and lots of information to digest. Nannyb xx

[Gidge]

Any mention of the new guidelines?

[Mavary]

Hi Gidge. Guide lines for what? I'm afraid I didn't hear anything like that. Maybe ask dall05. Sorry. My mind was elsewhere if anything was said.

[mustcarryon]

Do they ever hold these events in the West Midlands?

[Hidden in reply to mustcarryon]

Don't know but would this one in South Manchester 22/11 be of any interest? actionpulmonaryfibrosis.org/

[mustcarryon in reply to Hidden]

Thanks for that mapal. It is a bit of a way if you don't drive. However, I couldn't make it on that day anyway.

[katieoxo60]

Maybe the BLF helpline could answer mustcarryon's question .

[mustcarryon]

Hi katieoxo60. That's a good idea, i'll contact them tomorrow. thanks.

mustcarryon