Re: Re: Hope you can open this

[Guest guest]

Stef.... thanks for doing this.....I've never seen Peggy's article because I couldn't open it when it was written up.

I didn't see a video tho'... scrolled all the way to the bottom.

Hi Peggy...hope you're having a 'good' day.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Hope you can open this

Just so you know, Peggy, I was able to open the web archive of your article. I "printed" it in .pdf format which might be easier for some members. Please find attachment of same.Peggy's Article.pdfStefaniILD / 2006, Diabetes II / 2006, PF / 2009, Sleep Apnea / 2009>> Hi Group, In Jan 2008 I had my local newspaper here and they did an > article for the paper and a video. My purpose was to start a support > group locally. I did hear from all over the place except here.. go > figure. Plus we need to get the word out about our disease> so just maybe we can get funding for our P F Foundation to give for > research.> I do hope you can open this it may give you some ideas to help get > help for we PF'ers.> > I can hardly stand when we get younger and younger members here... it > is just a shame that we don't get the attention other> diseases get.. Anyhow here it is.> > > > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > >

[Guest guest]

Thank you, Stefani, I couldn't open it. Beverley

Re: Hope you can open this

Check New Files for .pdf of Peggy's Article> >> > Hi Group, In Jan 2008 I had my local newspaper here and they did an > > article for the paper and a video. My purpose was to start a support > > group locally. I did hear from all over the place except here.. go > > figure. Plus we need to get the word out about our disease> > so just maybe we can get funding for our P F Foundation to give for > > research.> > I do hope you can open this it may give you some ideas to help get > > help for we PF'ers.> > > > I can hardly stand when we get younger and younger members here... it > > is just a shame that we don't get the attention other> > diseases get.. Anyhow here it is.> > > > > > > > > > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> > > > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> > > > > > > >>

[Guest guest]

Stef,

It's absolutely fine that you posted Peggy's interview and also the updated Patient Information Handbook. In looking at the older version that's up there, I see that it's the original one that Leanne posted when she started the board back in 2005. I'm going to delete the old one. I do encourage everyone to visit the Foundation's website (www.pulmonaryfibrosis.org) as there is a lot of useful information there, not just the handbook.

In general members can post things to the file section. There have been occasions where someone has posted something inappropriate and I've had to remove it but that happens very rarely. We're all grownups. If you want to post something and you're not certain whether or not it's relevent or appropriate, feel free to run it by me.

Thanks!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, April 25, 2009 9:24:21 PMSubject: Re: Hope you can open this

I was unable to open any video... all I got was the "Hugs" symbol she uses. I thought the .pdf of the article was worth putting in the files section. Don't know if I should do this or not... I don't know if it should have been cleared with Beth (as she is moderator) or if it was OK for me to take the initiative. Are there any rules on participation or are we expected to be adults and use our better judgement (seeing as we can be booted out for not being a responsible member). There is also the more up to date PF brochure that has the table of life expectancy that the "patient2.doc" does not have. It was the document I came across in my internet searches that really shook me in my boots. My pulmo-dude and regular Dr. have never said anything nor offered any advice. I got this website because my husband is "tired of listening" and was looking for another outlet for me. My husband is an Engineer and is quite computer savvy. My son is working on his

doctorate in computer programming at Iowa State and he is quite glad I have found this site helpful (takes the pressure of him as well). LOL You just gotta love 'em ;-DStef> >> > Hi Group, In Jan 2008 I had my local newspaper here and they did an > > article for the paper and a video. My purpose was to start a support

> > group locally. I did hear from all over the place except here.. go > > figure. Plus we need to get the word out about our disease> > so just maybe we can get funding for our P F Foundation to give for > > research.> > I do hope you can open this it may give you some ideas to help get > > help for we PF'ers.> > > > I can hardly stand when we get younger and younger members here... it > > is just a shame that we don't get the attention other> > diseases get.. Anyhow here it is.> > > > > > > > > > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> > > > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> > > > > > >

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