Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Hello Well I have emailed every local TV station about " CF AWARENESS WEEK " .So far I have gottten one response from someone who wants to do a story...=) If its up to me, we are going to have publicity for our CF Walks now and whatnot...Before you never knew they were even happening.Surprising since NC has so many CF Centers and TX Centers. Here is the Plea I made to the Stations.... Hello I was wondering if it would be possible for you to do a few segments on Cystic Fibrosis during the week of October 13-19th for " National Cystic Fibrosis Awareness Week " . North Carolina has several Nationally Recognized Cystic Fibrosis or " CF " Centers yet little is publicized on the disease and all it entails. I myself have CF as do most of my friends and my husband. We met in the hospital during what we call a " TUNE-UP " . I am only 24 years old and have lost more friends than I can count on both hands to this disease.Too many lives lost and too many tears shed b/c of this horrid disease. Imagine being 24 years old and unable too work,go to school,and tethered to an oxygen tube 24/7. I have friends who would love to be interviewed and give the viewing area a glimpse into their lives and all that CF entails to just stay alive.Some participate in CF research studies at UNC Chapel Hill. Also the Country singer Tammy Cochran wrote an award winning song about the couragous battle her two brothers fought against CF.The Song is Called " Angles in Waiting " The video was in the top 20 videos of the year I believe. Here are some other sites you may want to view to get an idea about CF : Cystic-L :Email Support Group http://www.cystic-l.org National Cystic Fibrosis Awareness Site http://www.cfawareness.org/ I do hope you will call me so we can help battle this disease. R. Snyder YOUNGLUNG SUPPORT SERVICES www.topica.com/lists/younglung Becki YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 I was wondering if it is everywhere or just certain places , I live in Indiana and i was wondering if they have it here too for cf awareness week , does anyone know?? mother of 3 ywcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 I was wondering if it is everywhere or just certain places , I live in Indiana and i was wondering if they have it here too for cf awareness week , does anyone know?? mother of 3 ywcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 That would be great to get some air time here in NC!! Good Luck! Leigh CF Awareness Week Hello Well I have emailed every local TV station about " CF AWARENESS WEEK " .So far I have gottten one response from someone who wants to do a story...=) If its up to me, we are going to have publicity for our CF Walks now and whatnot...Before you never knew they were even happening.Surprising since NC has so many CF Centers and TX Centers. Here is the Plea I made to the Stations.... Hello I was wondering if it would be possible for you to do a few segments on Cystic Fibrosis during the week of October 13-19th for " National Cystic Fibrosis Awareness Week " . North Carolina has several Nationally Recognized Cystic Fibrosis or " CF " Centers yet little is publicized on the disease and all it entails. I myself have CF as do most of my friends and my husband. We met in the hospital during what we call a " TUNE-UP " . I am only 24 years old and have lost more friends than I can count on both hands to this disease.Too many lives lost and too many tears shed b/c of this horrid disease. Imagine being 24 years old and unable too work,go to school,and tethered to an oxygen tube 24/7. I have friends who would love to be interviewed and give the viewing area a glimpse into their lives and all that CF entails to just stay alive.Some participate in CF research studies at UNC Chapel Hill. Also the Country singer Tammy Cochran wrote an award winning song about the couragous battle her two brothers fought against CF.The Song is Called " Angles in Waiting " The video was in the top 20 videos of the year I believe. Here are some other sites you may want to view to get an idea about CF : Cystic-L :Email Support Group http://www.cystic-l.org National Cystic Fibrosis Awareness Site http://www.cfawareness.org/ I do hope you will call me so we can help battle this disease. R. Snyder YOUNGLUNG SUPPORT SERVICES www.topica.com/lists/younglung Becki YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 It is for all the USA . You have to do the awareness things though . :) Go GIRL!!!! & THANKS, Love & hugs, grandmomBEV Re: CF Awareness Week I was wondering if it is everywhere or just certain places , I live in Indiana and i was wondering if they have it here too for cf awareness week , does anyone know?? mother of 3 ywcf PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 It is for all the USA . You have to do the awareness things though . :) Go GIRL!!!! & THANKS, Love & hugs, grandmomBEV Re: CF Awareness Week I was wondering if it is everywhere or just certain places , I live in Indiana and i was wondering if they have it here too for cf awareness week , does anyone know?? mother of 3 ywcf PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 It is for all the USA . You have to do the awareness things though . :) Go GIRL!!!! & THANKS, Love & hugs, grandmomBEV Re: CF Awareness Week I was wondering if it is everywhere or just certain places , I live in Indiana and i was wondering if they have it here too for cf awareness week , does anyone know?? mother of 3 ywcf PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Where do you live here in Indiana? I live in Centerville and I have made pens and I can mail you a couple. thanks, Traci Re: CF Awareness Week I was wondering if it is everywhere or just certain places , I live in Indiana and i was wondering if they have it here too for cf awareness week , does anyone know?? mother of 3 ywcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Where do you live here in Indiana? I live in Centerville and I have made pens and I can mail you a couple. thanks, Traci Re: CF Awareness Week I was wondering if it is everywhere or just certain places , I live in Indiana and i was wondering if they have it here too for cf awareness week , does anyone know?? mother of 3 ywcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 HI! The week is national. It was just declared unanimously by the Senate. Check out more info on the website: http://www.cfawareness.org >I was wondering if it is everywhere or just certain places , I >live in > Indiana and i was wondering if they have it here too >for cf awareness week , does anyone know?? mother >of 3 ywcf > > >PLEASE do not post religious emails to the list. > > >------------------------------------------- > > >The opinions and information exchanged on this list should >IN NO WAY >be construed as medical advice. > >PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >-------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 I live in Blanford Indiana close to Terre Haute,Email me and i can give you my home address, Kdenney239@... And yes i would love to have some pins thank you !! karen mother of 3wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 I live in Blanford Indiana close to Terre Haute,Email me and i can give you my home address, Kdenney239@... And yes i would love to have some pins thank you !! karen mother of 3wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 I live in Blanford Indiana close to Terre Haute,Email me and i can give you my home address, Kdenney239@... And yes i would love to have some pins thank you !! karen mother of 3wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 hey we are from indiana too lin ( county) do you know of anything planned for cf awareness week ( like walks or anything) thanks christy (daughter--> shianne will be 2 in november w cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 hey we are from indiana too lin ( county) do you know of anything planned for cf awareness week ( like walks or anything) thanks christy (daughter--> shianne will be 2 in november w cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Hi Traci, whether to play the pity me card or not is subject of constant discussion here in Germany too. I have spoken with our national CF foundation about it, because I personally don't like the approach. But I was assured that if you want to raise more money you have to go the emotional route and save the people with sheer facts. Fortunately many of our kids are doing so well that we feel bad if we play the pity-me card. But then if we wait until there is reason to pity us it's too late :-(( So we have to be split minded. On the one hand we need to be optimistic, because otherwise we would loose it (at least I would). But on the other hand we have to admit that the average life expectancy of pwcf is less than half of healthy people and that is a pity and needs to be changed. Peace Torsten > I first want to say that this week has been very enlightening for me. Where I work (in a college environment) I passed out over 60 ribbons, and I have only done it to friends and professors that helped me raise money in Great Strides walks in the past and I have had a tremendous response. I only gave 2 ribbons to students that work for me and they have sent at least 10 students to me with information that they have siblings/cousins/or some form a relative that has CF. We are tabling in the student center tomorrow and they are helping me. I think that this is great. > > I have had one complaint for the information letter that I have been passing out with my pins. I didn't put what I call " the death factor " in my information. I feel with being 3 years old, I don't want to dwell on that. Am I being stupid? That was what I was called, well not in that word, really naive and denying the truth was the way she put it to me. In my information I state website addresses where they can go and find that information out for them selves. I noticed the CFF wants us to put that in also. Isn't this playing the " pity me " card? Please don't flame, I know that this can be a sticky subject for some. > > Sorry for this being real long > > Thanks and everyone have a great rest of the week. > > Traci mom of 3 and only 1 w/cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Torsten,, I do think your very right .We have to go both ways. It seems many folks , untouched by pain or heart ache, just don't give to help others . Heaven forbid , anything ever happens to those folks. But , we must be diligent in our fight against the desease.Thanks for your part in helping us all work towards this!! bets wishes & great thoughts to you , Fiona & Silke.........:) LOVE & HUGS, GrandmomBEV Re: CF Awareness week Hi Traci, whether to play the pity me card or not is subject of constant discussion here in Germany too. I have spoken with our national CF foundation about it, because I personally don't like the approach. But I was assured that if you want to raise more money you have to go the emotional route and save the people with sheer facts. Fortunately many of our kids are doing so well that we feel bad if we play the pity-me card. But then if we wait until there is reason to pity us it's too late :-(( So we have to be split minded. On the one hand we need to be optimistic, because otherwise we would loose it (at least I would). But on the other hand we have to admit that the average life expectancy of pwcf is less than half of healthy people and that is a pity and needs to be changed. Peace Torsten > I first want to say that this week has been very enlightening for me. Where I work (in a college environment) I passed out over 60 ribbons, and I have only done it to friends and professors that helped me raise money in Great Strides walks in the past and I have had a tremendous response. I only gave 2 ribbons to students that work for me and they have sent at least 10 students to me with information that they have siblings/cousins/or some form a relative that has CF. We are tabling in the student center tomorrow and they are helping me. I think that this is great. > > I have had one complaint for the information letter that I have been passing out with my pins. I didn't put what I call " the death factor " in my information. I feel with being 3 years old, I don't want to dwell on that. Am I being stupid? That was what I was called, well not in that word, really naive and denying the truth was the way she put it to me. In my information I state website addresses where they can go and find that information out for them selves. I noticed the CFF wants us to put that in also. Isn't this playing the " pity me " card? Please don't flame, I know that this can be a sticky subject for some. > > Sorry for this being real long > > Thanks and everyone have a great rest of the week. > > Traci mom of 3 and only 1 w/cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Torsten,, I do think your very right .We have to go both ways. It seems many folks , untouched by pain or heart ache, just don't give to help others . Heaven forbid , anything ever happens to those folks. But , we must be diligent in our fight against the desease.Thanks for your part in helping us all work towards this!! bets wishes & great thoughts to you , Fiona & Silke.........:) LOVE & HUGS, GrandmomBEV Re: CF Awareness week Hi Traci, whether to play the pity me card or not is subject of constant discussion here in Germany too. I have spoken with our national CF foundation about it, because I personally don't like the approach. But I was assured that if you want to raise more money you have to go the emotional route and save the people with sheer facts. Fortunately many of our kids are doing so well that we feel bad if we play the pity-me card. But then if we wait until there is reason to pity us it's too late :-(( So we have to be split minded. On the one hand we need to be optimistic, because otherwise we would loose it (at least I would). But on the other hand we have to admit that the average life expectancy of pwcf is less than half of healthy people and that is a pity and needs to be changed. Peace Torsten > I first want to say that this week has been very enlightening for me. Where I work (in a college environment) I passed out over 60 ribbons, and I have only done it to friends and professors that helped me raise money in Great Strides walks in the past and I have had a tremendous response. I only gave 2 ribbons to students that work for me and they have sent at least 10 students to me with information that they have siblings/cousins/or some form a relative that has CF. We are tabling in the student center tomorrow and they are helping me. I think that this is great. > > I have had one complaint for the information letter that I have been passing out with my pins. I didn't put what I call " the death factor " in my information. I feel with being 3 years old, I don't want to dwell on that. Am I being stupid? That was what I was called, well not in that word, really naive and denying the truth was the way she put it to me. In my information I state website addresses where they can go and find that information out for them selves. I noticed the CFF wants us to put that in also. Isn't this playing the " pity me " card? Please don't flame, I know that this can be a sticky subject for some. > > Sorry for this being real long > > Thanks and everyone have a great rest of the week. > > Traci mom of 3 and only 1 w/cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Torsten,, I do think your very right .We have to go both ways. It seems many folks , untouched by pain or heart ache, just don't give to help others . Heaven forbid , anything ever happens to those folks. But , we must be diligent in our fight against the desease.Thanks for your part in helping us all work towards this!! bets wishes & great thoughts to you , Fiona & Silke.........:) LOVE & HUGS, GrandmomBEV Re: CF Awareness week Hi Traci, whether to play the pity me card or not is subject of constant discussion here in Germany too. I have spoken with our national CF foundation about it, because I personally don't like the approach. But I was assured that if you want to raise more money you have to go the emotional route and save the people with sheer facts. Fortunately many of our kids are doing so well that we feel bad if we play the pity-me card. But then if we wait until there is reason to pity us it's too late :-(( So we have to be split minded. On the one hand we need to be optimistic, because otherwise we would loose it (at least I would). But on the other hand we have to admit that the average life expectancy of pwcf is less than half of healthy people and that is a pity and needs to be changed. Peace Torsten > I first want to say that this week has been very enlightening for me. Where I work (in a college environment) I passed out over 60 ribbons, and I have only done it to friends and professors that helped me raise money in Great Strides walks in the past and I have had a tremendous response. I only gave 2 ribbons to students that work for me and they have sent at least 10 students to me with information that they have siblings/cousins/or some form a relative that has CF. We are tabling in the student center tomorrow and they are helping me. I think that this is great. > > I have had one complaint for the information letter that I have been passing out with my pins. I didn't put what I call " the death factor " in my information. I feel with being 3 years old, I don't want to dwell on that. Am I being stupid? That was what I was called, well not in that word, really naive and denying the truth was the way she put it to me. In my information I state website addresses where they can go and find that information out for them selves. I noticed the CFF wants us to put that in also. Isn't this playing the " pity me " card? Please don't flame, I know that this can be a sticky subject for some. > > Sorry for this being real long > > Thanks and everyone have a great rest of the week. > > Traci mom of 3 and only 1 w/cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Lynette, What statement did they remove from Great Strides Brocher? I must have missed that post. from PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Lynette, What statement did they remove from Great Strides Brocher? I must have missed that post. from PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 Lynette, What statement did they remove from Great Strides Brocher? I must have missed that post. from PA Quote Link to comment Share on other sites More sharing options...
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