Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 I didn't watch the show, but when i saw it advertised on GMA, I saw red again. I see red, because, cancer gets a lot publicity and there are so many other diseases that need the publicity, funding, research, etc, too. Was very disappointed last year when Goulet and Evel Kneivel died and the media did not pick up on the pulmony fibrosis. That would have been good timing to publicize this monster. Pink Joyce IPF 3/06 Pennslvania Subject: Re: Jack and Diane~Geeta and To: Breathe-Support Date: Saturday, September 6, 2008, 12:29 PM MB ... last night I was watching Stand Up For Cancer and thought wouldn't it be nice if something similar could be done for us? Maybe start with local call-ins/production and expand out from there. At least we would get some notice! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Pink ... I know, I'm amazed too that our disease receives so little attention! I guess it's just still too little knowledge to pay much attention. One day, someone will pay attention, especially if it's a "big name". MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 MamaSher A thought while waiting for the call. Could we possible talk to the docs and staff where we receive treatment and request that they along with hospitals reach out to the news media with data on PF? The media wouldn't give us(patients) the time of day, but if the professionals in this business would try, maybe information about PF and the people with this illness will come to light on at least a state level. A national level is probably not possible unless someone could contact a news anchor type person. Its just a thought, but one that has to begin locally. I'm trying here at -Jewish and will at my hometown medical group when I return home. As I said its just a thought for now. Any views from others? Mo IPF 06-08--awaiting the call! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 I posted a week or two ago how my daughter is in the process of creating a national organization to support wives and children of Vietnam veterans who were exposed to Agent Orange and to gain national recognition of their terrible predictiment. She is doing so by creating spaces on YouTube and MySpace where individuals can post their stories. There is no cost to do this. I think this is an ideal venue for getting a great detail of attention to our situations. I presume it is fairly simple and easy to create these sites, that is for everyone but me. Google both sites and look through for efforts by other to gain national attention to their plight. Perhaps we can find a way to do this for ourselves. Local attention is good, but national attention is best. Since no one commented on my earlier posting, I assumed this not something of interest to the group. Hopefully, I was wrong. sends her regards. Jack79/IPF - UIP/dx06/05 Maine Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 ... in my opinion, we need to talk to anyone who treats us. We don't know who THEY may know. I'm surprised our pulmonologists don't speak out more. Like at medical conventions and such. I watch for your posts, glad you are still keeping the faith...... Love to you and Sharon. (Gosh I hope I remembered correctly!) MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Jack ... I did see your former post and I personally did not reply because it will take someone more computer savvy than I to begin. It does seem logical that what works for one organization should work for another. Does your daughter give you any info. as how to "get going" initially? I'm an accurate and fast typist but I admit I'm no longer the trail blazer I used to be. Oh how I loved those days. Give me a cause and I was off and running! People used to say, "If you want something done, give it to Sher". If there is someone here on the board who is interested in "blazing a trail" I'll sure be helpful where I can... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Jack, what name do we use on my space to see your daughters you tube??? It is a good Idea.If you are referring to the dinner invite.. " OH YEAH" come on down.. Silver Springs, Fl.my number is in the database.. love a good steak. Beth and Jane will be here the week-end of the 19th.  3 for 1  ;)Love & Prayers, PeggyFlorida,  IPF/UIP"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." I posted a week or two ago how my daughter is in the process of creating a national organization to support wives and children of Vietnam veterans who were exposed to Agent Orange and to gain national recognition of their terrible predictiment. She is doing so by creating spaces on YouTube and MySpace where individuals can post their stories. There is no cost to do this. I think this is an ideal venue for getting a great detail of attention to our situations. I presume it is fairly simple and easy to create these sites, that is for everyone but me. Google both sites and look through for efforts by other to gain national attention to their plight. Perhaps we can find a way to do this for ourselves. Local attention is good, but national attention is best. Since no one commented on my earlier posting, I assumed this not something of interest to the group. Hopefully, I was wrong. sends her regards. Jack79/IPF - UIP/dx06/05 Maine Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself.This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive      Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 I can't find my notes and will have to get it from her again. In the interim, I think you can check back for my emails. I posted it about two weeks ago. I'm not sure how you do that, but Beth and Bruce and probably many others know how. Jack79/IPF - UIP/dx06/05 Maine Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 Jack, I found it. Here it is in case anyone else is interested.Thanks Jack. I had an Uncle That was in Vietnam and had all sorts of illnesses as he aged. Died young. in his 60's I believe. www.dovv.net (Daughters of Vietnam Veterans) andwww.neilmed.com/usa/index.phd. Love and Prayers, Peggy   IPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." I can't find my notes and will have to get it from her again. In the interim, I think you can check back for my emails. I posted it about two weeks ago. I'm not sure how you do that, but Beth and Bruce and probably many others know how. Jack79/IPF - UIP/dx06/05 Maine Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself.This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive      Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2008 Report Share Posted September 7, 2008 maybe if we all "bombard" the national media with our "plight", they will respondPink Joyce IPF 3/06 Pennslvania From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Jack and Diane~Geeta and To: Breathe-Support@ yahoogroups. comDate: Saturday, September 6, 2008, 12:29 PM MB ... last night I was watching Stand Up For Cancer and thought wouldn't it be nice if something similar could be done for us? Maybe start with local call-ins/production and expand out from there. At least we would get some notice! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Pink, Were you on the board when I had the article in our local paper and the videoon their web site.? I was hoping it would get more attention to our disease but I didget lots of attention when I went shopping.. It was fun and I did talk to quite a few peopleI had phone calls from several other states too. If ya just send an e-mail to the Health editor in your news paper they will contact you.Hopefully be curious enough to do a piece. If we all tried it SOMEONE just may seeit and help the Foundation.Love & Prayers, PeggyFlorida,  IPF/UIP"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." maybe if we all "bombard" the national media with our "plight", they will respondPink Joyce IPF 3/06  Pennslvania --- On Sun, 9/7/08, george mathews <georgemathews76 (AT) yahoo (DOT) com>wrote:From: george mathews <georgemathews76 (AT) yahoo (DOT) com>Subject: Re: publicityTo: Breathe-Support Date: Sunday, September 7, 2008, 12:34 PMMamaSher A thought while waiting for the call. Could we possible talk to the docs and staff where we receive treatment and request that they along with hospitals reach out to the news media with data on PF? The media wouldn't give us(patients) the time of day, but if the professionals in this business would try, maybe information about PF and the people with this illness will come to light on at least a state level. A national level is probably not possible unless someone could contact a news anchor type person. Its just a thought, but one that has to begin locally. I'm trying here at -Jewish and will at my hometown medical group when I return home. As I said its just a thought for now. Any views from others?  Mo IPF 06-08--awaiting the call! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself.This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive      Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 peggy i don't remember seeing anything about the pr that you did. if it is still available, i would like to see it. good idea about the local papers Pink Joyce IPF 3/06 Pennslvania From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Jack and Diane~Geeta and To: Breathe-Support@ yahoogroups. comDate: Saturday, September 6, 2008, 12:29 PM MB ... last night I was watching Stand Up For Cancer and thought wouldn't it be nice if something similar could be done for us? Maybe start with local call-ins/production and expand out from there. At least we would get some notice! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Another thought on posting our stories on MySpace and YouTube is that it would be really effective if the spouses/families of those who have passed on could post those stories and pics and how the disease and the loss of a loved one affected them. Jack79/IPF - UIP/dx06/05 Maine Jack and Diane~Geeta and It makes me so happy when we take the time and trouble to connect with each other and meet in person. I guess because when I've had the privilege of meeting others from this group it has been a gift to myself. This disease can be very isolating in an odd way. I mean I'm still relatively active given my disease. I'm out and about seeing people pretty much every day. However, I'm alone with this illness. My family and friends love me but none of them understand what it's like to walk in my shoes. When we meet one another the connection is instant. I feel pretty much immediately at ease in the company of someone else who "gets it" because he or she has it. I also love that the meetings have now gone international! This group is the best!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Quote Link to comment Share on other sites More sharing options...
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