Guest guest Posted November 28, 2008 Report Share Posted November 28, 2008 No it won't be me running and I don't know a thing about organizing a run so I figured it would take a year or 6 mos. to plan.But my daughter is training for her 3rd Houston Marathon in January,so she is where I got the fun run idea from. I guess I sit in this apartment all dayand yesterday I wanted to scream to the world about us.Not to take away from anyone else's pain, but I am real tired of seeing pink everywhere I go. I would really like more feed back guys and after the holidays we could possibly get the ball rolling.I guess I visualized, maybe someone has a connection some where for this, and some one else has a connection for that some where else, it may materialize. If it is to be, it will succeed!!!!!!!!!!!!!!!.KathyS.TX. dx/10/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Yes, Kathy, it will succeed. You are already getting response. I'm with you emotionally. I'm tired too of ONLY a "pink" color to be recognized. I'm behind you in support however. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! a thought No it won't be me running and I don't know a thing about organizing a run so I figured it would take a year or 6 mos. to plan.But my daughter is training for her 3rd Houston Marathon in January,so she is where I got the fun run idea from. I guess I sit in this apartment all dayand yesterday I wanted to scream to the world about us.Not to take away from anyone else's pain, but I am real tired of seeing pink everywhere I go. I would really like more feed back guys and after the holidays we could possibly get the ball rolling.I guess I visualized, maybe someone has a connection some where for this, and some one else has a connection for that some where else, it may materialize. If it is to be, it will succeed!!!!!!!!!!!!!!!.KathyS.TX. dx/10/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 we all know how I see RED when they keep bombarding PINK down our throats exception: Pink Joyce lol Pink Joyce IPF 3/06 Pennsylvania Subject: Re: a thoughtTo: Breathe-Support Date: Saturday, November 29, 2008, 1:49 PM Yes, Kathy, it will succeed. You are already getting response. I'm with you emotionally. I'm tired too of ONLY a "pink" color to be recognized. I'm behind you in support however. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! a thought No it won't be me running and I don't know a thing about organizing a run so I figured it would take a year or 6 mos. to plan.But my daughter is training for her 3rd Houston Marathon in January,so she is where I got the fun run idea from. I guess I sit in this apartment all dayand yesterday I wanted to scream to the world about us.Not to take away from anyone else's pain, but I am real tired of seeing pink everywhere I go. I would really like more feed back guys and after the holidays we could possibly get the ball rolling.I guess I visualized, maybe someone has a connection some where for this, and some one else has a connection for that some where else, it may materialize. If it is to be, it will succeed!!!!! !!!!!!!!! !.KathyS.TX. dx/10/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Pink Joyce and everyone else...I don't see RED with all the PINK. My 88 year old Mom is 10 year breast cancer survivor. I do wish that other causes could get the attention( especially ours!) We need a great PR person!!! A face to attach to our PF situation! The PINK was started by the sister of B. Koman and she had PR experience to make her sister's death from cancer into the huge fund raising thing it has become. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Joyce T Rosenberg wrote: we all know how I see RED when they keep bombarding PINK down our throats exception: Pink Joyce lol Pink Joyce IPF 3/06 Pennsylvania From: Sher Bauman <bofus (AT) wbcable (DOT) net> Subject: Re: a thought To: Breathe-Support Date: Saturday, November 29, 2008, 1:49 PM Yes, Kathy, it will succeed. You are already getting response. I'm with you emotionally. I'm tired too of ONLY a "pink" color to be recognized. I'm behind you in support however. MamaSher, age 70. IPF 3-06, OR. Nasturtiums Don't fret about tomorrow, God is already there! ----- Original Message ----- From: Kathy Souflee To: Breathe-Support@ yahoogroups. com Sent: Friday, November 28, 2008 2:49 PM Subject: a thought No it won't be me running and I don't know a thing about organizing a run so I figured it would take a year or 6 mos. to plan.But my daughter is training for her 3rd Houston Marathon in January,so she is where I got the fun run idea from. I guess I sit in this apartment all dayand yesterday I wanted to scream to the world about us.Not to take away from anyone else's pain, but I am real tired of seeing pink everywhere I go. I would really like more feed back guys and after the holidays we could possibly get the ball rolling.I guess I visualized, maybe someone has a connection some where for this, and some one else has a connection for that some where else, it may materialize. If it is to be, it will succeed!!!!! !!!!!!!!! !. KathyS.TX. dx/10/04 No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date: 11/29/2008 10:37 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Well said Sista.....it's to be expected that there's heaps of PINK out there... it reflects the numbers of lives affected by that disease...... That reality doesn't stop us from feeling ...all on our lonesome! Just as well we have each other! lotsa in Oz> >> > > Subject: Re: a thought> > To: Breathe-Support > > Date: Saturday, November 29, 2008, 1:49 PM> >> > Yes, Kathy, it will succeed. You are already getting response.> > I'm with you emotionally. I'm tired too of ONLY a "pink" color to> > be recognized.> > I'm behind you in support however.> > MamaSher, age 70. IPF 3-06, OR. > > Nasturtiums> > Don't fret about tomorrow, God is already there!> >> > * a thought> >> > No it won't be me running and I don't know a thing about> > organizing a run so I figured it would take a year or 6 mos.> > to plan.But my daughter is training for her 3rd Houston> > Marathon in January,so she is where I got the fun run idea> > from. I guess I sit in this apartment all dayand yesterday I> > wanted to scream to the world about us.Not to take away from> > anyone else's pain, but I am real tired of seeing pink> > everywhere I go. I would really like more feed back guys and> > after the holidays we could possibly get the ball rolling.I> > guess I visualized, maybe someone has a connection some where> > for this, and some one else has a connection for that some> > where else, it may materialize. If it is to be, it will> > succeed!!!!! !!!!!!!!! !.> > KathyS.TX. dx/10/04> >> >> > > > ------------------------------------------------------------------------> >> >> > No virus found in this incoming message.> > Checked by AVG - http://www.avg.com > > Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date: 11/29/2008 10:37 AM> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 I don't either. Now, do I feel some causes get more than perhaps their percentage? Yes, but I don't find that relevant. I am glad there are people giving to any causes. There are charities I give to and others I would never consider but for different reasons. Now, I'm not going to get into analzying one charity versus another here except I have discussed the one that should be helping us and isn't before, the American Lung Association. I must say too since this is the " Pink " question, the following. One of the big differences in breast cancer versus our disease is that it can be detected early and lives saved and can be cured. Now, I do want future lives saved from PF. Very much. But, I am very happy of the awareness created for breast cancer and I'm happy to see the efforts not with some celebrities toward Colon Cancer screening. It's another that is preventable in some cases and treatable in others with timely colonoscopies. I probably wouldn't be a PF'er today without my colonoscopy 3 1/2 years ago. I also have a great fear for many non-profits with the economic crisis. I'm afraid the amounts given for charitable organizations will decrease significantly. Let me toss this question for thought. If you had $5 million given to you to be used for PF, how would you use it? 1-Research 2-Education of those with and families 3-Awareness of general public 4-To assist those with the disease 5-To encourage more organ donation Now, lets not argue over how we would use it but simply say in our minds where we would put it if it was our money to put. There is no right or wrong answer. Just food for thought. > > > > From: Sher Bauman bofus@... > > Subject: Re: a thought > > To: Breathe-Support > > Date: Saturday, November 29, 2008, 1:49 PM > > > > Yes, Kathy, it will succeed. You are already getting response. > > I'm with you emotionally. I'm tired too of ONLY a " pink " color to > > be recognized. > > I'm behind you in support however. > > MamaSher, age 70. IPF 3-06, OR. > > Nasturtiums > > Don't fret about tomorrow, God is already there! > > > > * a thought > > > > No it won't be me running and I don't know a thing about > > organizing a run so I figured it would take a year or 6 mos. > > to plan.But my daughter is training for her 3rd Houston > > Marathon in January,so she is where I got the fun run idea > > from. I guess I sit in this apartment all dayand yesterday I > > wanted to scream to the world about us.Not to take away from > > anyone else's pain, but I am real tired of seeing pink > > everywhere I go. I would really like more feed back guys and > > after the holidays we could possibly get the ball rolling.I > > guess I visualized, maybe someone has a connection some where > > for this, and some one else has a connection for that some > > where else, it may materialize. If it is to be, it will > > succeed!!!!! !!!!!!!!! !. > > KathyS.TX. dx/10/04 > > > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date: 11/29/2008 10:37 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Bruce, If I had $5 million ..I'd make the medical profession in general more aware of PF in all its forms and fund research for causes and cures. I agree that the American Lung Association is incredibly lax in its coverage of PF..in fact I couldn't find any pertinent info about NSIP on their site at all when I first was DX'd. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Bruce Moreland wrote: I don't either. Now, do I feel some causes get more than perhaps their percentage? Yes, but I don't find that relevant. I am glad there are people giving to any causes. There are charities I give to and others I would never consider but for different reasons. Now, I'm not going to get into analzying one charity versus another here except I have discussed the one that should be helping us and isn't before, the American Lung Association. I must say too since this is the "Pink" question, the following. One of the big differences in breast cancer versus our disease is that it can be detected early and lives saved and can be cured. Now, I do want future lives saved from PF. Very much. But, I am very happy of the awareness created for breast cancer and I'm happy to see the efforts not with some celebrities toward Colon Cancer screening. It's another that is preventable in some cases and treatable in others with timely colonoscopies. I probably wouldn't be a PF'er today without my colonoscopy 3 1/2 years ago. I also have a great fear for many non-profits with the economic crisis. I'm afraid the amounts given for charitable organizations will decrease significantly. Let me toss this question for thought. If you had $5 million given to you to be used for PF, how would you use it? 1-Research 2-Education of those with and families 3-Awareness of general public 4-To assist those with the disease 5-To encourage more organ donation Now, lets not argue over how we would use it but simply say in our minds where we would put it if it was our money to put. There is no right or wrong answer. Just food for thought. > > > > From: Sher Bauman bofus@... > > Subject: Re: a thought > > To: Breathe-Support > > Date: Saturday, November 29, 2008, 1:49 PM > > > > Yes, Kathy, it will succeed. You are already getting response. > > I'm with you emotionally. I'm tired too of ONLY a "pink" color to > > be recognized. > > I'm behind you in support however. > > MamaSher, age 70. IPF 3-06, OR. > > Nasturtiums > > Don't fret about tomorrow, God is already there! > > > > * a thought > > > > No it won't be me running and I don't know a thing about > > organizing a run so I figured it would take a year or 6 mos. > > to plan.But my daughter is training for her 3rd Houston > > Marathon in January,so she is where I got the fun run idea > > from. I guess I sit in this apartment all dayand yesterday I > > wanted to scream to the world about us.Not to take away from > > anyone else's pain, but I am real tired of seeing pink > > everywhere I go. I would really like more feed back guys and > > after the holidays we could possibly get the ball rolling.I > > guess I visualized, maybe someone has a connection some where > > for this, and some one else has a connection for that some > > where else, it may materialize. If it is to be, it will > > succeed!!!!! !!!!!!!!! !. > > KathyS.TX. dx/10/04 > > > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date: 11/29/2008 10:37 AM > > > > > No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date: 11/29/2008 10:37 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 While we continue to work for PF causes at our levels and the PFF does a great job, one of the disappointments I've had is that the families and friends of those famous persons to die from the disease and/or those famous who have lost family members to it have not used their celebrity status to do more for the cause. Evel Knievel and his family are the one exception but there are many who could have built a greater constituency. I did write and email the family of one around whom something would have definitely been possible with no response. As a recent example, look at what Cook's participation on American Idol did for awareness of brain cancer and raising of funds. If we could get a national celebrity as good as Wally is in Snyder then we'd reach some high numbers of people. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 I left part of that one out of my list and wish I hadn't. Just educating doctors would be a huge task. We witness such lack of knowledge in the profession and when we see those not diagnosed until they've had it for years and are near death it tells you something. I'm not saying they should diagnose at the first sign but something as simple as the value of a six minute walk so that no one is under oxygenated seems simple enough. I heard someone very knowledgeable say he didn't believe there were more than 100 Pulmonologists in the country competent in the diagnosis and treatment of PF. I might not go that far, but I do believe that its been lost and buried beneath all the COPD patients. I think there are thousands undiagnosed completely and thousands more diagnosed as having COPD when they really have PF. Likewise I'm now seeing some diagnosed with PF who haven't even had CT's. > > > > > > > > From: Sher Bauman bofus@ > > > > Subject: Re: a thought > > > > To: Breathe-Support > > <mailto:Breathe-Support%40yahoogroups.com> > > > > Date: Saturday, November 29, 2008, 1:49 PM > > > > > > > > Yes, Kathy, it will succeed. You are already getting response. > > > > I'm with you emotionally. I'm tired too of ONLY a " pink " color to > > > > be recognized. > > > > I'm behind you in support however. > > > > MamaSher, age 70. IPF 3-06, OR. > > > > Nasturtiums > > > > Don't fret about tomorrow, God is already there! > > > > > > > > * a thought > > > > > > > > No it won't be me running and I don't know a thing about > > > > organizing a run so I figured it would take a year or 6 mos. > > > > to plan.But my daughter is training for her 3rd Houston > > > > Marathon in January,so she is where I got the fun run idea > > > > from. I guess I sit in this apartment all dayand yesterday I > > > > wanted to scream to the world about us.Not to take away from > > > > anyone else's pain, but I am real tired of seeing pink > > > > everywhere I go. I would really like more feed back guys and > > > > after the holidays we could possibly get the ball rolling.I > > > > guess I visualized, maybe someone has a connection some where > > > > for this, and some one else has a connection for that some > > > > where else, it may materialize. If it is to be, it will > > > > succeed!!!!! !!!!!!!!! !. > > > > KathyS.TX. dx/10/04 > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG - http://www.avg.com <http://www.avg.com> > > > > Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date: > > 11/29/2008 10:37 AM > > > > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date: 11/29/2008 10:37 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 I do agree about the celebrity status and that they in my opinion should have done more even the media didn't pick up on the disease when the celebs diedPink Joyce IPF 3/06 Pennsylvania Subject: Re: a thoughtTo: Breathe-Support Date: Sunday, November 30, 2008, 12:38 AM While we continue to work for PF causes at our levels and the PFF does agreat job, one of the disappointments I've had is that the families andfriends of those famous persons to die from the disease and/or thosefamous who have lost family members to it have not used their celebritystatus to do more for the cause. Evel Knievel and his family are the oneexception but there are many who could have built a greaterconstituency. I did write and email the family of one around whomsomething would have definitely been possible with no response.As a recent example, look at what Cook's participation on AmericanIdol did for awareness of brain cancer and raising of funds.If we could get a national celebrity as good as Wally is in Snyder thenwe'd reach some high numbers of people. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 i agree about the amirican lung association the coalition for pulmonary fibrosis seems to have an active constituency (spelling?) there were a lot of people at the seminar in New York a couple of years agoPink Joyce IPF 3/06 Pennsylvania I don't either. Now, do I feel some causes get more than perhaps theirpercentage? Yes, but I don't find that relevant. I am glad there arepeople giving to any causes. There are charities I give to and others Iwould never consider but for different reasons. Now, I'm not going toget into analzying one charity versus another here except I havediscussed the one that should be helping us and isn't before, theAmerican Lung Association.I must say too since this is the "Pink" question, the following. One ofthe big differences in breast cancer versus our disease is that it canbe detected early and lives saved and can be cured. Now, I do wantfuture lives saved from PF. Very much. But, I am very happy of theawareness created for breast cancer and I'm happy to see the efforts notwith some celebrities toward Colon Cancer screening. It's another thatis preventable in some cases and treatable in others with timelycolonoscopies. I probably wouldn't be a PF'er today without mycolonoscopy 3 1/2 years ago.I also have a great fear for many non-profits with the economic crisis.I'm afraid the amounts given for charitable organizations will decreasesignificantly.Let me toss this question for thought. If you had $5 million given toyou to be used for PF, how would you use it?1-Research2-Education of those with and families3-Awareness of general public4-To assist those with the disease5-To encourage more organ donationNow, lets not argue over how we would use it but simply say in our mindswhere we would put it if it was our money to put. There is no right orwrong answer. Just food for thought.> >> > > Subject: Re: a thought> > To: Breathe-Support@ yahoogroups. com> > Date: Saturday, November 29, 2008, 1:49 PM> >> > Yes, Kathy, it will succeed. You are already getting response.> > I'm with you emotionally. I'm tired too of ONLY a "pink" color to> > be recognized.> > I'm behind you in support however.> > MamaSher, age 70. IPF 3-06, OR.> > Nasturtiums> > Don't fret about tomorrow, God is already there!> >> > * a thought> >> > No it won't be me running and I don't know a thing about> > organizing a run so I figured it would take a year or 6 mos.> > to plan.But my daughter is training for her 3rd Houston> > Marathon in January,so she is where I got the fun run idea> > from. I guess I sit in this apartment all dayand yesterday I> > wanted to scream to the world about us.Not to take away from> > anyone else's pain, but I am real tired of seeing pink> > everywhere I go. I would really like more feed back guys and> > after the holidays we could possibly get the ball rolling.I> > guess I visualized, maybe someone has a connection some where> > for this, and some one else has a connection for that some> > where else, it may materialize. If it is to be, it will> > succeed!!!!! !!!!!!!!! !.> > KathyS.TX. dx/10/04> >> >> >> >------------ --------- --------- --------- --------- --------- -> >> >> > No virus found in this incoming message.> > Checked by AVG - http://www.avg. com> > Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date:11/29/2008 10:37 AM> >> >> No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.176 / Virus Database: 270.9.11/1819 - Release Date: 11/29/2008 10:37 AM Quote Link to comment Share on other sites More sharing options...
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