Guest guest Posted April 24, 2009 Report Share Posted April 24, 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 diseaseso 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 otherdiseases get.. Anyhow here it is. Love & Prayers, PeggyFlorida, 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." 2 of 2 File(s) Woman deals with diagnosis of deadly lung disease.webarchive pastedGraphic.tiff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 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 ;-D Stef > > > > 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. " > > > > > >  > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 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 ;-D Stef > > > > 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. " > > > > > >  > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2009 Report Share Posted April 25, 2009 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 ;-D Stef > > > > 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. " > > > > > >  > > > Quote Link to comment Share on other sites More sharing options...
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