Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 MB thanks appreciate it ; how are you doing.. pray all is well. i had a brainstorm which can be dangerous.. just would need a few people to pull it off. i would do the letter and communicaton but couldn't do the spiel... that would be volunteers... bruce, MB, joyce, etc.. writing to Oprah and telling her about PF and that we want to help the public become more aware.. she has a heart fo r these things just maybe.. whatcha think gang.. patti,ipf 7'06,nj > > > > Men's Lacrosse: Colby helps raise more than $10k towards Pulmonary > > Fibrosis Research > > > > November 28, 2008 > > from press releases > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team and the > > Waterville Police Department recently joined forces to raise more > than > > $10,000 in the first annual Bench Press for Pulmonary Fibrosis. > > > > Each member of the Colby men's lacrosse team collected pledges that > > were for per repetition of 135 pounds on the bench press. The team > set > > up the bench outside Pulver Pavilion on the Colby campus. The team > > sold bracelets, passed out flyers, and educated the student body on > > Pulmonary Fibrosis. Members of the team then benched 135 pounds as > > many times as possible to raise money. > > > > Junior Max Weiss was a leader in organizing the event and helped > man > > the bench press for the entire 12-hour event. > > > > " It's clear that this event meant a great deal to the Colby > lacrosse > > family and in particular to Max. He was there for the entire day > > supporting his teammates while collecting the most pledges and the > > second most amount of money, " Colby men's lacrosse coach Jon > > > said. " Max has proven that he has a passion for being civically > > engaged on campus and I couldn't be more proud of him. " > > > > also was happy to partner with the Waterville Police > > Department and police chief Joe Massey on the venture. > > > > " I cannot thank Chief Massey enough. Not only did he help raise > money > > and awareness for the Pulmonary Fibrosis Foundation, but he lifted > the > > weights right alongside our men, " said. " His involvement > in > > the event was a wonderful gesture on the part of the Waterville > Police > > Department. " > > > > Pulmonary Fibrosis is a devastating disease that involves scarring > of > > the lung tissue. Often misdiagnosed, people with Pulmonary Fibrosis > > experience extreme discomfort as the air sacs of the lungs > gradually > > become replaced by fibrotic tissue. When the scar forms, the tissue > > becomes thicker causing an irreversible loss of the tissue's > ability > > to transfer oxygen into the bloodstream. > > > > Close to 40,000 people die every year from Pulmonary Fibrosis in > the > > United States. More than 200,000 people in the U.S. have been > > diagnosed with the disease and an additional 50,000 are likely to > be > > diagnosed in 2009. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 I sent Oprah an email regarding this a few weeks ago. How about bombarding her with a few more? > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > Pulmonary > > > Fibrosis Research > > > > > > November 28, 2008 > > > from press releases > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team and > the > > > Waterville Police Department recently joined forces to raise > more > > than > > > $10,000 in the first annual Bench Press for Pulmonary Fibrosis. > > > > > > Each member of the Colby men's lacrosse team collected pledges > that > > > were for per repetition of 135 pounds on the bench press. The > team > > set > > > up the bench outside Pulver Pavilion on the Colby campus. The > team > > > sold bracelets, passed out flyers, and educated the student body > on > > > Pulmonary Fibrosis. Members of the team then benched 135 pounds > as > > > many times as possible to raise money. > > > > > > Junior Max Weiss was a leader in organizing the event and helped > > man > > > the bench press for the entire 12-hour event. > > > > > > " It's clear that this event meant a great deal to the Colby > > lacrosse > > > family and in particular to Max. He was there for the entire day > > > supporting his teammates while collecting the most pledges and > the > > > second most amount of money, " Colby men's lacrosse coach Jon > > > > > said. " Max has proven that he has a passion for being civically > > > engaged on campus and I couldn't be more proud of him. " > > > > > > also was happy to partner with the Waterville Police > > > Department and police chief Joe Massey on the venture. > > > > > > " I cannot thank Chief Massey enough. Not only did he help raise > > money > > > and awareness for the Pulmonary Fibrosis Foundation, but he > lifted > > the > > > weights right alongside our men, " said. " His > involvement > > in > > > the event was a wonderful gesture on the part of the Waterville > > Police > > > Department. " > > > > > > Pulmonary Fibrosis is a devastating disease that involves > scarring > > of > > > the lung tissue. Often misdiagnosed, people with Pulmonary > Fibrosis > > > experience extreme discomfort as the air sacs of the lungs > > gradually > > > become replaced by fibrotic tissue. When the scar forms, the > tissue > > > becomes thicker causing an irreversible loss of the tissue's > > ability > > > to transfer oxygen into the bloodstream. > > > > > > Close to 40,000 people die every year from Pulmonary Fibrosis in > > the > > > United States. More than 200,000 people in the U.S. have been > > > diagnosed with the disease and an additional 50,000 are likely > to > > be > > > diagnosed in 2009. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 My mind is not as good as my determination is anymore. Like many others here I am sick of hearing people say they know what I have and how hard it is since they, too, have COPD just like I do. I do open my mouth at that one and explain that there is a big difference between this and COPD. Even on those days where I am not up to par and my voice is weak I still can get out what this is. You never know who will hear you and take it to heart and be in the position to do something to at least spread the word about this. The only reason that other things like breast cancer get the attention that it does today is because more and more people heard about it and started demanding that something gets done to help those victims. When you look at the famous people who died in silence from this you have to wonder why it is still a huge silent killer. I think that because it silently zaps our strength and our voices, it is not getting its due share of attention and research. Well our voices might be weak in reflection of how this weakens the system but we have something that breast cancer did not have when it started getting attention. We have our computers and the internet and for those who do not have loud voices, we can use these tools for our voice. Just my feelings on it. At 5'3, I may be small and have a weak voice that tires way too soon but no one knows that when it goes across the internet. Jean > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > Pulmonary > > > > > Fibrosis Research > > > > > > > > > > November 28, 2008 > > > > > from press releases > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > and > > > the > > > > > Waterville Police Department recently joined forces to raise > > > more > > > > than > > > > > $10,000 in the first annual Bench Press for Pulmonary > Fibrosis. > > > > > > > > > > Each member of the Colby men's lacrosse team collected > pledges > > > that > > > > > were for per repetition of 135 pounds on the bench press. > The > > > team > > > > set > > > > > up the bench outside Pulver Pavilion on the Colby campus. > The > > > team > > > > > sold bracelets, passed out flyers, and educated the student > > body > > > on > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > pounds > > > as > > > > > many times as possible to raise money. > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > helped > > > > man > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > " It's clear that this event meant a great deal to the Colby > > > > lacrosse > > > > > family and in particular to Max. He was there for the entire > day > > > > > supporting his teammates while collecting the most pledges > and > > > the > > > > > second most amount of money, " Colby men's lacrosse coach Jon > > > > > > > > > said. " Max has proven that he has a passion for being > civically > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > also was happy to partner with the Waterville Police > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he help > raise > > > > money > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > lifted > > > > the > > > > > weights right alongside our men, " said. " His > > > involvement > > > > in > > > > > the event was a wonderful gesture on the part of the > Waterville > > > > Police > > > > > Department. " > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > scarring > > > > of > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > Fibrosis > > > > > experience extreme discomfort as the air sacs of the lungs > > > > gradually > > > > > become replaced by fibrotic tissue. When the scar forms, the > > > tissue > > > > > becomes thicker causing an irreversible loss of the tissue's > > > > ability > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > Fibrosis > > in > > > > the > > > > > United States. More than 200,000 people in the U.S. have been > > > > > diagnosed with the disease and an additional 50,000 are > likely > > > to > > > > be > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 My mind is not as good as my determination is anymore. Like many others here I am sick of hearing people say they know what I have and how hard it is since they, too, have COPD just like I do. I do open my mouth at that one and explain that there is a big difference between this and COPD. Even on those days where I am not up to par and my voice is weak I still can get out what this is. You never know who will hear you and take it to heart and be in the position to do something to at least spread the word about this. The only reason that other things like breast cancer get the attention that it does today is because more and more people heard about it and started demanding that something gets done to help those victims. When you look at the famous people who died in silence from this you have to wonder why it is still a huge silent killer. I think that because it silently zaps our strength and our voices, it is not getting its due share of attention and research. Well our voices might be weak in reflection of how this weakens the system but we have something that breast cancer did not have when it started getting attention. We have our computers and the internet and for those who do not have loud voices, we can use these tools for our voice. Just my feelings on it. At 5'3, I may be small and have a weak voice that tires way too soon but no one knows that when it goes across the internet. Jean > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > Pulmonary > > > > > Fibrosis Research > > > > > > > > > > November 28, 2008 > > > > > from press releases > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > and > > > the > > > > > Waterville Police Department recently joined forces to raise > > > more > > > > than > > > > > $10,000 in the first annual Bench Press for Pulmonary > Fibrosis. > > > > > > > > > > Each member of the Colby men's lacrosse team collected > pledges > > > that > > > > > were for per repetition of 135 pounds on the bench press. > The > > > team > > > > set > > > > > up the bench outside Pulver Pavilion on the Colby campus. > The > > > team > > > > > sold bracelets, passed out flyers, and educated the student > > body > > > on > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > pounds > > > as > > > > > many times as possible to raise money. > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > helped > > > > man > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > " It's clear that this event meant a great deal to the Colby > > > > lacrosse > > > > > family and in particular to Max. He was there for the entire > day > > > > > supporting his teammates while collecting the most pledges > and > > > the > > > > > second most amount of money, " Colby men's lacrosse coach Jon > > > > > > > > > said. " Max has proven that he has a passion for being > civically > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > also was happy to partner with the Waterville Police > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he help > raise > > > > money > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > lifted > > > > the > > > > > weights right alongside our men, " said. " His > > > involvement > > > > in > > > > > the event was a wonderful gesture on the part of the > Waterville > > > > Police > > > > > Department. " > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > scarring > > > > of > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > Fibrosis > > > > > experience extreme discomfort as the air sacs of the lungs > > > > gradually > > > > > become replaced by fibrotic tissue. When the scar forms, the > > > tissue > > > > > becomes thicker causing an irreversible loss of the tissue's > > > > ability > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > Fibrosis > > in > > > > the > > > > > United States. More than 200,000 people in the U.S. have been > > > > > diagnosed with the disease and an additional 50,000 are > likely > > > to > > > > be > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 My mind is not as good as my determination is anymore. Like many others here I am sick of hearing people say they know what I have and how hard it is since they, too, have COPD just like I do. I do open my mouth at that one and explain that there is a big difference between this and COPD. Even on those days where I am not up to par and my voice is weak I still can get out what this is. You never know who will hear you and take it to heart and be in the position to do something to at least spread the word about this. The only reason that other things like breast cancer get the attention that it does today is because more and more people heard about it and started demanding that something gets done to help those victims. When you look at the famous people who died in silence from this you have to wonder why it is still a huge silent killer. I think that because it silently zaps our strength and our voices, it is not getting its due share of attention and research. Well our voices might be weak in reflection of how this weakens the system but we have something that breast cancer did not have when it started getting attention. We have our computers and the internet and for those who do not have loud voices, we can use these tools for our voice. Just my feelings on it. At 5'3, I may be small and have a weak voice that tires way too soon but no one knows that when it goes across the internet. Jean > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > Pulmonary > > > > > Fibrosis Research > > > > > > > > > > November 28, 2008 > > > > > from press releases > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > and > > > the > > > > > Waterville Police Department recently joined forces to raise > > > more > > > > than > > > > > $10,000 in the first annual Bench Press for Pulmonary > Fibrosis. > > > > > > > > > > Each member of the Colby men's lacrosse team collected > pledges > > > that > > > > > were for per repetition of 135 pounds on the bench press. > The > > > team > > > > set > > > > > up the bench outside Pulver Pavilion on the Colby campus. > The > > > team > > > > > sold bracelets, passed out flyers, and educated the student > > body > > > on > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > pounds > > > as > > > > > many times as possible to raise money. > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > helped > > > > man > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > " It's clear that this event meant a great deal to the Colby > > > > lacrosse > > > > > family and in particular to Max. He was there for the entire > day > > > > > supporting his teammates while collecting the most pledges > and > > > the > > > > > second most amount of money, " Colby men's lacrosse coach Jon > > > > > > > > > said. " Max has proven that he has a passion for being > civically > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > also was happy to partner with the Waterville Police > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he help > raise > > > > money > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > lifted > > > > the > > > > > weights right alongside our men, " said. " His > > > involvement > > > > in > > > > > the event was a wonderful gesture on the part of the > Waterville > > > > Police > > > > > Department. " > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > scarring > > > > of > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > Fibrosis > > > > > experience extreme discomfort as the air sacs of the lungs > > > > gradually > > > > > become replaced by fibrotic tissue. When the scar forms, the > > > tissue > > > > > becomes thicker causing an irreversible loss of the tissue's > > > > ability > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > Fibrosis > > in > > > > the > > > > > United States. More than 200,000 people in the U.S. have been > > > > > diagnosed with the disease and an additional 50,000 are > likely > > > to > > > > be > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 What an honest and very true explanation. I feel like i have so much to say wth this illness and want to shout it out to the world....but shouting means losing my breath and coughing. i wanted to organize a walk....but can't do the walk. I feel like this disease is slowly taking away my voice and my passions are being silenced...we all need to get together on this somehow.....but how > > > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary > > > > > > Fibrosis Research > > > > > > > > > > > > November 28, 2008 > > > > > > from press releases > > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the > > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than > > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis. > > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that > > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set > > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team > > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on > > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as > > > > > > many times as possible to raise money. > > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man > > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > > > " It's clear that this event meant a great deal to the Colby > > > > > lacrosse > > > > > > family and in particular to Max. He was there for the > entire > > day > > > > > > supporting his teammates while collecting the most pledges > > and > > > > the > > > > > > second most amount of money, " Colby men's lacrosse coach > Jon > > > > > > > > > > > said. " Max has proven that he has a passion for being > > civically > > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > > > also was happy to partner with the Waterville > Police > > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the > > > > > > weights right alongside our men, " said. " His > > > > involvement > > > > > in > > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police > > > > > > Department. " > > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of > > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis > > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually > > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue > > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability > > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the > > > > > > United States. More than 200,000 people in the U.S. have > been > > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be > > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 well said Jeane i also think one of the problems is that for those of us with this monster, the life span is shorter than with some breast cancers and we might be too sick to be "activisists" we need family and friends to be actively involved ALS or Lou Gehrig's disease has an active voice in the community via family and friends a problem that i see in philadelphia is that there are 2 ALS organizations--i wish they would combine--share the funds, share the research, etc pancreatic cancer has what i think is an inactive voice because it can be such a quick killer unless friends and family become active -- both my mother and brother died from this my mother lived about 2-3 months from diagnosis, my brother lived about 2 months from diagnosis it's one of those diseases that by the time it is diagnosed it is too late with one exception--the specific location in the pancreas heart disease is the other disease close to my heart--my father and oldest brother died from that--so did my nephew's infant heart disease seems to be very well organized and of course people with heart disease can live for a very long time with it Pink Joyce IPF 3/06 Pennsylvania Subject: Re: News ArticleTo: Breathe-Support Date: Wednesday, December 3, 2008, 11:46 AM My mind is not as good as my determination is anymore. Like many others here I am sick of hearing people say they know what I have and how hard it is since they, too, have COPD just like I do. I do open my mouth at that one and explain that there is a big difference between this and COPD. Even on those days where I am not up to par and my voice is weak I still can get out what this is. You never know who will hear you and take it to heart and be in the position to do something to at least spread the word about this.The only reason that other things like breast cancer get the attention that it does today is because more and more people heard about it and started demanding that something gets done to help those victims. When you look at the famous people who died in silence from this you have to wonder why it is still a huge silent killer. I think that because it silently zaps our strength and our voices, it is not getting its due share of attention and research. Well our voices might be weak in reflection of how this weakens the system but we have something that breast cancer did not have when it started getting attention. We have our computers and the internet and for those who do not have loud voices, we can use these tools for our voice. Just my feelings on it. At 5'3, I may be small and have a weak voice that tires way too soon but no one knows that when it goes across the internet. Jean> > > > >> > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > Pulmonary> > > > > Fibrosis Research> > > > > > > > > > November 28, 2008> > > > > from press releases> > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > and > > > the> > > > > Waterville Police Department recently joined forces to raise > > > more > > > > than> > > > > $10,000 in the first annual Bench Press for Pulmonary > Fibrosis.> > > > > > > > > > Each member of the Colby men's lacrosse team collected > pledges > > > that> > > > > were for per repetition of 135 pounds on the bench press. > The > > > team > > > > set> > > > > up the bench outside Pulver Pavilion on the Colby campus. > The > > > team> > > > > sold bracelets, passed out flyers, and educated the student > > body > > > on> > > > > Pulmonary Fibrosis. Members of the team then benched 135 > pounds > > > as> > > > > many times as possible to raise money.> > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > helped > > > > man> > > > > the bench press for the entire 12-hour event.> > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > lacrosse> > > > > family and in particular to Max. He was there for the entire > day> > > > > supporting his teammates while collecting the most pledges > and > > > the> > > > > second most amount of money," Colby men's lacrosse coach Jon > > > > > > > > > said. "Max has proven that he has a passion for being > civically> > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > also was happy to partner with the Waterville Police> > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > raise > > > > money> > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > lifted > > > > the> > > > > weights right alongside our men," said. "His > > > involvement > > > > in> > > > > the event was a wonderful gesture on the part of the > Waterville > > > > Police> > > > > Department."> > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > scarring > > > > of> > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > Fibrosis> > > > > experience extreme discomfort as the air sacs of the lungs > > > > gradually> > > > > become replaced by fibrotic tissue. When the scar forms, the > > > tissue> > > > > becomes thicker causing an irreversible loss of the tissue's > > > > ability> > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > Close to 40,000 people die every year from Pulmonary > Fibrosis > > in > > > > the> > > > > United States. More than 200,000 people in the U.S. have been> > > > > diagnosed with the disease and an additional 50,000 are > likely > > > to > > > > be> > > > > diagnosed in 2009.> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Most people in my family died from heart disease including my son at 12 days and my niece exactly 5 years to the hour after my son. She was born 3 weeks before him. I have had 2 heart attacks already by age 51. Yet I do see so much representation and research being done that if they were born today, neither would have died. They were unfortunately born with heart problems 25 years ago. He died 35 year ago on Thanksgiving Day. The 27th of Nov has always been bittersweet since that day since it was my grandfather's birthday and my grandparents anniversary. I do not know what the answers are in getting people to notice and more importantly care enough to do what it will take. But I keep talking, hoping and trying. jean > > > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary > > > > > > Fibrosis Research > > > > > > > > > > > > November 28, 2008 > > > > > > from press releases > > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the > > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than > > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis. > > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that > > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set > > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team > > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on > > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as > > > > > > many times as possible to raise money. > > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man > > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > > > " It's clear that this event meant a great deal to the Colby > > > > > lacrosse > > > > > > family and in particular to Max. He was there for the > entire > > day > > > > > > supporting his teammates while collecting the most pledges > > and > > > > the > > > > > > second most amount of money, " Colby men's lacrosse coach > Jon > > > > > > > > > > > said. " Max has proven that he has a passion for being > > civically > > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > > > also was happy to partner with the Waterville > Police > > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the > > > > > > weights right alongside our men, " said. " His > > > > involvement > > > > > in > > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police > > > > > > Department. " > > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of > > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis > > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually > > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue > > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability > > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the > > > > > > United States. More than 200,000 people in the U.S. have > been > > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be > > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Most people in my family died from heart disease including my son at 12 days and my niece exactly 5 years to the hour after my son. She was born 3 weeks before him. I have had 2 heart attacks already by age 51. Yet I do see so much representation and research being done that if they were born today, neither would have died. They were unfortunately born with heart problems 25 years ago. He died 35 year ago on Thanksgiving Day. The 27th of Nov has always been bittersweet since that day since it was my grandfather's birthday and my grandparents anniversary. I do not know what the answers are in getting people to notice and more importantly care enough to do what it will take. But I keep talking, hoping and trying. jean > > > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary > > > > > > Fibrosis Research > > > > > > > > > > > > November 28, 2008 > > > > > > from press releases > > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the > > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than > > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis. > > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that > > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set > > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team > > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on > > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as > > > > > > many times as possible to raise money. > > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man > > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > > > " It's clear that this event meant a great deal to the Colby > > > > > lacrosse > > > > > > family and in particular to Max. He was there for the > entire > > day > > > > > > supporting his teammates while collecting the most pledges > > and > > > > the > > > > > > second most amount of money, " Colby men's lacrosse coach > Jon > > > > > > > > > > > said. " Max has proven that he has a passion for being > > civically > > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > > > also was happy to partner with the Waterville > Police > > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the > > > > > > weights right alongside our men, " said. " His > > > > involvement > > > > > in > > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police > > > > > > Department. " > > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of > > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis > > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually > > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue > > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability > > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the > > > > > > United States. More than 200,000 people in the U.S. have > been > > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be > > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 Most people in my family died from heart disease including my son at 12 days and my niece exactly 5 years to the hour after my son. She was born 3 weeks before him. I have had 2 heart attacks already by age 51. Yet I do see so much representation and research being done that if they were born today, neither would have died. They were unfortunately born with heart problems 25 years ago. He died 35 year ago on Thanksgiving Day. The 27th of Nov has always been bittersweet since that day since it was my grandfather's birthday and my grandparents anniversary. I do not know what the answers are in getting people to notice and more importantly care enough to do what it will take. But I keep talking, hoping and trying. jean > > > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary > > > > > > Fibrosis Research > > > > > > > > > > > > November 28, 2008 > > > > > > from press releases > > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the > > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than > > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis. > > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that > > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set > > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team > > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on > > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as > > > > > > many times as possible to raise money. > > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man > > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > > > " It's clear that this event meant a great deal to the Colby > > > > > lacrosse > > > > > > family and in particular to Max. He was there for the > entire > > day > > > > > > supporting his teammates while collecting the most pledges > > and > > > > the > > > > > > second most amount of money, " Colby men's lacrosse coach > Jon > > > > > > > > > > > said. " Max has proven that he has a passion for being > > civically > > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > > > also was happy to partner with the Waterville > Police > > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the > > > > > > weights right alongside our men, " said. " His > > > > involvement > > > > > in > > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police > > > > > > Department. " > > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of > > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis > > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually > > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue > > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability > > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the > > > > > > United States. More than 200,000 people in the U.S. have > been > > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be > > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 The other problem with recognition by the larger world of our illness vs it's recognition of something like breast cancer is the numbers. While the number of deaths for pulmonary fibrosis and breast cancer are very close at about 40,000 per year. There are in excess of over 200,000 new cases of breast cancer diagnosed every year as compared with 45,000-50,000 new cases of pulmonary fibrosis each year. At any given time there are literally millions of people, mostly women living with and fighting breast cancer. While there are somewhere between 150,000-250,000 of people like us with pulmonary fibrosis of one kind or another. The numbers vary depending on whose statistics you accept and what website you read but the bottom line is there are many many more people with something like breast cancer than pulmonary fibrosis. There are more of them and they live longer than we do. That's the big reason they get so much more attention than we do. All that could be extremely discouraging but it just means that there's more work for us to do. Keep talking to people, write letters, educate the people around you. Never miss an opportunity to answer a question. Jean is absolutely right and is an inspiration. We may be sick and weak at times but our spirits are strong! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Wednesday, December 3, 2008 7:50:38 PMSubject: Re: Re: News Article well said Jeane i also think one of the problems is that for those of us with this monster, the life span is shorter than with some breast cancers and we might be too sick to be "activisists" we need family and friends to be actively involved ALS or Lou Gehrig's disease has an active voice in the community via family and friends a problem that i see in philadelphia is that there are 2 ALS organizations- -i wish they would combine--share the funds, share the research, etc pancreatic cancer has what i think is an inactive voice because it can be such a quick killer unless friends and family become active -- both my mother and brother died from this my mother lived about 2-3 months from diagnosis, my brother lived about 2 months from diagnosis it's one of those diseases that by the time it is diagnosed it is too late with one exception--the specific location in the pancreas heart disease is the other disease close to my heart--my father and oldest brother died from that--so did my nephew's infant heart disease seems to be very well organized and of course people with heart disease can live for a very long time with it Pink Joyce IPF 3/06 Pennsylvania From: jeane7160 <jeane7160 (AT) yahoo (DOT) com>Subject: Re: News ArticleTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 3, 2008, 11:46 AM My mind is not as good as my determination is anymore. Like many others here I am sick of hearing people say they know what I have and how hard it is since they, too, have COPD just like I do. I do open my mouth at that one and explain that there is a big difference between this and COPD. Even on those days where I am not up to par and my voice is weak I still can get out what this is. You never know who will hear you and take it to heart and be in the position to do something to at least spread the word about this.The only reason that other things like breast cancer get the attention that it does today is because more and more people heard about it and started demanding that something gets done to help those victims. When you look at the famous people who died in silence from this you have to wonder why it is still a huge silent killer. I think that because it silently zaps our strength and our voices, it is not getting its due share of attention and research. Well our voices might be weak in reflection of how this weakens the system but we have something that breast cancer did not have when it started getting attention. We have our computers and the internet and for those who do not have loud voices, we can use these tools for our voice. Just my feelings on it. At 5'3, I may be small and have a weak voice that tires way too soon but no one knows that when it goes across the internet. Jean> > > > >> > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > Pulmonary> > > > > Fibrosis Research> > > > > > > > > > November 28, 2008> > > > > from press releases> > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > and > > > the> > > > > Waterville Police Department recently joined forces to raise > > > more > > > > than> > > > > $10,000 in the first annual Bench Press for Pulmonary > Fibrosis.> > > > > > > > > > Each member of the Colby men's lacrosse team collected > pledges > > > that> > > > > were for per repetition of 135 pounds on the bench press. > The > > > team > > > > set> > > > > up the bench outside Pulver Pavilion on the Colby campus. > The > > > team> > > > > sold bracelets, passed out flyers, and educated the student > > body > > > on> > > > > Pulmonary Fibrosis. Members of the team then benched 135 > pounds > > > as> > > > > many times as possible to raise money.> > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > helped > > > > man> > > > > the bench press for the entire 12-hour event.> > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > lacrosse> > > > > family and in particular to Max. He was there for the entire > day> > > > > supporting his teammates while collecting the most pledges > and > > > the> > > > > second most amount of money," Colby men's lacrosse coach Jon > > > > > > > > > said. "Max has proven that he has a passion for being > civically> > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > also was happy to partner with the Waterville Police> > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > raise > > > > money> > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > lifted > > > > the> > > > > weights right alongside our men," said. "His > > > involvement > > > > in> > > > > the event was a wonderful gesture on the part of the > Waterville > > > > Police> > > > > Department."> > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > scarring > > > > of> > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > Fibrosis> > > > > experience extreme discomfort as the air sacs of the lungs > > > > gradually> > > > > become replaced by fibrotic tissue. When the scar forms, the > > > tissue> > > > > becomes thicker causing an irreversible loss of the tissue's > > > > ability> > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > Close to 40,000 people die every year from Pulmonary > Fibrosis > > in > > > > the> > > > > United States. More than 200,000 people in the U.S. have been> > > > > diagnosed with the disease and an additional 50,000 are > likely > > > to > > > > be> > > > > diagnosed in 2009.> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 The other problem with recognition by the larger world of our illness vs it's recognition of something like breast cancer is the numbers. While the number of deaths for pulmonary fibrosis and breast cancer are very close at about 40,000 per year. There are in excess of over 200,000 new cases of breast cancer diagnosed every year as compared with 45,000-50,000 new cases of pulmonary fibrosis each year. At any given time there are literally millions of people, mostly women living with and fighting breast cancer. While there are somewhere between 150,000-250,000 of people like us with pulmonary fibrosis of one kind or another. The numbers vary depending on whose statistics you accept and what website you read but the bottom line is there are many many more people with something like breast cancer than pulmonary fibrosis. There are more of them and they live longer than we do. That's the big reason they get so much more attention than we do. All that could be extremely discouraging but it just means that there's more work for us to do. Keep talking to people, write letters, educate the people around you. Never miss an opportunity to answer a question. Jean is absolutely right and is an inspiration. We may be sick and weak at times but our spirits are strong! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Wednesday, December 3, 2008 7:50:38 PMSubject: Re: Re: News Article well said Jeane i also think one of the problems is that for those of us with this monster, the life span is shorter than with some breast cancers and we might be too sick to be "activisists" we need family and friends to be actively involved ALS or Lou Gehrig's disease has an active voice in the community via family and friends a problem that i see in philadelphia is that there are 2 ALS organizations- -i wish they would combine--share the funds, share the research, etc pancreatic cancer has what i think is an inactive voice because it can be such a quick killer unless friends and family become active -- both my mother and brother died from this my mother lived about 2-3 months from diagnosis, my brother lived about 2 months from diagnosis it's one of those diseases that by the time it is diagnosed it is too late with one exception--the specific location in the pancreas heart disease is the other disease close to my heart--my father and oldest brother died from that--so did my nephew's infant heart disease seems to be very well organized and of course people with heart disease can live for a very long time with it Pink Joyce IPF 3/06 Pennsylvania From: jeane7160 <jeane7160 (AT) yahoo (DOT) com>Subject: Re: News ArticleTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 3, 2008, 11:46 AM My mind is not as good as my determination is anymore. Like many others here I am sick of hearing people say they know what I have and how hard it is since they, too, have COPD just like I do. I do open my mouth at that one and explain that there is a big difference between this and COPD. Even on those days where I am not up to par and my voice is weak I still can get out what this is. You never know who will hear you and take it to heart and be in the position to do something to at least spread the word about this.The only reason that other things like breast cancer get the attention that it does today is because more and more people heard about it and started demanding that something gets done to help those victims. When you look at the famous people who died in silence from this you have to wonder why it is still a huge silent killer. I think that because it silently zaps our strength and our voices, it is not getting its due share of attention and research. Well our voices might be weak in reflection of how this weakens the system but we have something that breast cancer did not have when it started getting attention. We have our computers and the internet and for those who do not have loud voices, we can use these tools for our voice. Just my feelings on it. At 5'3, I may be small and have a weak voice that tires way too soon but no one knows that when it goes across the internet. Jean> > > > >> > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > Pulmonary> > > > > Fibrosis Research> > > > > > > > > > November 28, 2008> > > > > from press releases> > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > and > > > the> > > > > Waterville Police Department recently joined forces to raise > > > more > > > > than> > > > > $10,000 in the first annual Bench Press for Pulmonary > Fibrosis.> > > > > > > > > > Each member of the Colby men's lacrosse team collected > pledges > > > that> > > > > were for per repetition of 135 pounds on the bench press. > The > > > team > > > > set> > > > > up the bench outside Pulver Pavilion on the Colby campus. > The > > > team> > > > > sold bracelets, passed out flyers, and educated the student > > body > > > on> > > > > Pulmonary Fibrosis. Members of the team then benched 135 > pounds > > > as> > > > > many times as possible to raise money.> > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > helped > > > > man> > > > > the bench press for the entire 12-hour event.> > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > lacrosse> > > > > family and in particular to Max. He was there for the entire > day> > > > > supporting his teammates while collecting the most pledges > and > > > the> > > > > second most amount of money," Colby men's lacrosse coach Jon > > > > > > > > > said. "Max has proven that he has a passion for being > civically> > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > also was happy to partner with the Waterville Police> > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > raise > > > > money> > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > lifted > > > > the> > > > > weights right alongside our men," said. "His > > > involvement > > > > in> > > > > the event was a wonderful gesture on the part of the > Waterville > > > > Police> > > > > Department."> > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > scarring > > > > of> > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > Fibrosis> > > > > experience extreme discomfort as the air sacs of the lungs > > > > gradually> > > > > become replaced by fibrotic tissue. When the scar forms, the > > > tissue> > > > > becomes thicker causing an irreversible loss of the tissue's > > > > ability> > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > Close to 40,000 people die every year from Pulmonary > Fibrosis > > in > > > > the> > > > > United States. More than 200,000 people in the U.S. have been> > > > > diagnosed with the disease and an additional 50,000 are > likely > > > to > > > > be> > > > > diagnosed in 2009.> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2008 Report Share Posted December 3, 2008 The other problem with recognition by the larger world of our illness vs it's recognition of something like breast cancer is the numbers. While the number of deaths for pulmonary fibrosis and breast cancer are very close at about 40,000 per year. There are in excess of over 200,000 new cases of breast cancer diagnosed every year as compared with 45,000-50,000 new cases of pulmonary fibrosis each year. At any given time there are literally millions of people, mostly women living with and fighting breast cancer. While there are somewhere between 150,000-250,000 of people like us with pulmonary fibrosis of one kind or another. The numbers vary depending on whose statistics you accept and what website you read but the bottom line is there are many many more people with something like breast cancer than pulmonary fibrosis. There are more of them and they live longer than we do. That's the big reason they get so much more attention than we do. All that could be extremely discouraging but it just means that there's more work for us to do. Keep talking to people, write letters, educate the people around you. Never miss an opportunity to answer a question. Jean is absolutely right and is an inspiration. We may be sick and weak at times but our spirits are strong! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Wednesday, December 3, 2008 7:50:38 PMSubject: Re: Re: News Article well said Jeane i also think one of the problems is that for those of us with this monster, the life span is shorter than with some breast cancers and we might be too sick to be "activisists" we need family and friends to be actively involved ALS or Lou Gehrig's disease has an active voice in the community via family and friends a problem that i see in philadelphia is that there are 2 ALS organizations- -i wish they would combine--share the funds, share the research, etc pancreatic cancer has what i think is an inactive voice because it can be such a quick killer unless friends and family become active -- both my mother and brother died from this my mother lived about 2-3 months from diagnosis, my brother lived about 2 months from diagnosis it's one of those diseases that by the time it is diagnosed it is too late with one exception--the specific location in the pancreas heart disease is the other disease close to my heart--my father and oldest brother died from that--so did my nephew's infant heart disease seems to be very well organized and of course people with heart disease can live for a very long time with it Pink Joyce IPF 3/06 Pennsylvania From: jeane7160 <jeane7160 (AT) yahoo (DOT) com>Subject: Re: News ArticleTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 3, 2008, 11:46 AM My mind is not as good as my determination is anymore. Like many others here I am sick of hearing people say they know what I have and how hard it is since they, too, have COPD just like I do. I do open my mouth at that one and explain that there is a big difference between this and COPD. Even on those days where I am not up to par and my voice is weak I still can get out what this is. You never know who will hear you and take it to heart and be in the position to do something to at least spread the word about this.The only reason that other things like breast cancer get the attention that it does today is because more and more people heard about it and started demanding that something gets done to help those victims. When you look at the famous people who died in silence from this you have to wonder why it is still a huge silent killer. I think that because it silently zaps our strength and our voices, it is not getting its due share of attention and research. Well our voices might be weak in reflection of how this weakens the system but we have something that breast cancer did not have when it started getting attention. We have our computers and the internet and for those who do not have loud voices, we can use these tools for our voice. Just my feelings on it. At 5'3, I may be small and have a weak voice that tires way too soon but no one knows that when it goes across the internet. Jean> > > > >> > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > Pulmonary> > > > > Fibrosis Research> > > > > > > > > > November 28, 2008> > > > > from press releases> > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > and > > > the> > > > > Waterville Police Department recently joined forces to raise > > > more > > > > than> > > > > $10,000 in the first annual Bench Press for Pulmonary > Fibrosis.> > > > > > > > > > Each member of the Colby men's lacrosse team collected > pledges > > > that> > > > > were for per repetition of 135 pounds on the bench press. > The > > > team > > > > set> > > > > up the bench outside Pulver Pavilion on the Colby campus. > The > > > team> > > > > sold bracelets, passed out flyers, and educated the student > > body > > > on> > > > > Pulmonary Fibrosis. Members of the team then benched 135 > pounds > > > as> > > > > many times as possible to raise money.> > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > helped > > > > man> > > > > the bench press for the entire 12-hour event.> > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > lacrosse> > > > > family and in particular to Max. He was there for the entire > day> > > > > supporting his teammates while collecting the most pledges > and > > > the> > > > > second most amount of money," Colby men's lacrosse coach Jon > > > > > > > > > said. "Max has proven that he has a passion for being > civically> > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > also was happy to partner with the Waterville Police> > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > raise > > > > money> > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > lifted > > > > the> > > > > weights right alongside our men," said. "His > > > involvement > > > > in> > > > > the event was a wonderful gesture on the part of the > Waterville > > > > Police> > > > > Department."> > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > scarring > > > > of> > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > Fibrosis> > > > > experience extreme discomfort as the air sacs of the lungs > > > > gradually> > > > > become replaced by fibrotic tissue. When the scar forms, the > > > tissue> > > > > becomes thicker causing an irreversible loss of the tissue's > > > > ability> > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > Close to 40,000 people die every year from Pulmonary > Fibrosis > > in > > > > the> > > > > United States. More than 200,000 people in the U.S. have been> > > > > diagnosed with the disease and an additional 50,000 are > likely > > > to > > > > be> > > > > diagnosed in 2009.> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 MB Are the numbers so low (in comparison with breast cancer) with PF because we are not being diagnosed at the first sign.. I know in my case the xray showed PF in '99 and my doc just said oh, and that was it. Still have the xray result showing that. Nothing was done until i got tired of being short of breath and wanted to keep being active with the grandbabies and kids.That was in 7'06. I'm curious. How many people are out there not knowing.. patti, ipf 7'06, nj > > > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary > > > > > > Fibrosis Research > > > > > > > > > > > > November 28, 2008 > > > > > > from press releases > > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the > > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than > > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis. > > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that > > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set > > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team > > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on > > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as > > > > > > many times as possible to raise money. > > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man > > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > > > " It's clear that this event meant a great deal to the Colby > > > > > lacrosse > > > > > > family and in particular to Max. He was there for the > entire > > day > > > > > > supporting his teammates while collecting the most pledges > > and > > > > the > > > > > > second most amount of money, " Colby men's lacrosse coach > Jon > > > > > > > > > > > said. " Max has proven that he has a passion for being > > civically > > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > > > also was happy to partner with the Waterville > Police > > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the > > > > > > weights right alongside our men, " said. " His > > > > involvement > > > > > in > > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police > > > > > > Department. " > > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of > > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis > > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually > > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue > > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability > > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the > > > > > > United States. More than 200,000 people in the U.S. have > been > > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be > > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Mine was finally diagnosed in 2005 but like I said I have reports from 2001 and 2002 showing that the radiologist informed the doctors that there were interstitial changes and scarring on both lungs and asking that more tests be done to find out what was going on. Both were ignored. In 2003 I had PFT's that were read as my having interstitial problems and the doctor who read them actually ignored that as well. It was not until I again changed doctors and my new one saw all of this stuff and sent me to another pulmo that anything was done to see what was going on. Even then it was just well you have interstitial lung disease and there is nothing that can be done for it. From there on my complaints of symptoms were met with " well that is the ILD " . It was not till Hershey that this was met with real concern. My bet is that there are many more out there that are treated like this. For so many people it is treated like something trivial like a hang nail that is going to be there forever. This being the case, the question is how many people die from pneumonia and other complications never knowing their diseased lungs were as bad. For those the death certificate does not reflect that they died from the lung disease they had that caused the complications that killed them. Since they died under a doctor's care there would be no need for autopsies that would reveal the true number of people who are victims of this. If there were autopsies done on people who died from pulmonary illnesses of any kind I am positive that the true numbers would be a lot higher and the gravity of this truely come to light in a big way. Victim's relatives would be screaming to get research going and people would not allow their doctors to drop the ball out of fear that it is going to get them and might not have to. Jean > > > > > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > > Pulmonary > > > > > > > Fibrosis Research > > > > > > > > > > > > > > November 28, 2008 > > > > > > > from press releases > > > > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse > team > > > and > > > > > the > > > > > > > Waterville Police Department recently joined forces to > > raise > > > > > more > > > > > > than > > > > > > > $10,000 in the first annual Bench Press for Pulmonary > > > Fibrosis. > > > > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > > pledges > > > > > that > > > > > > > were for per repetition of 135 pounds on the bench > press. > > > The > > > > > team > > > > > > set > > > > > > > up the bench outside Pulver Pavilion on the Colby > campus. > > > The > > > > > team > > > > > > > sold bracelets, passed out flyers, and educated the > student > > > > body > > > > > on > > > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > > pounds > > > > > as > > > > > > > many times as possible to raise money. > > > > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event > and > > > > helped > > > > > > man > > > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > > > > > " It's clear that this event meant a great deal to the > Colby > > > > > > lacrosse > > > > > > > family and in particular to Max. He was there for the > > entire > > > day > > > > > > > supporting his teammates while collecting the most > pledges > > > and > > > > > the > > > > > > > second most amount of money, " Colby men's lacrosse coach > > Jon > > > > > > > > > > > > > said. " Max has proven that he has a passion for being > > > civically > > > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > > > > > also was happy to partner with the Waterville > > Police > > > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he > help > > > raise > > > > > > money > > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but > he > > > > > lifted > > > > > > the > > > > > > > weights right alongside our men, " said. " His > > > > > involvement > > > > > > in > > > > > > > the event was a wonderful gesture on the part of the > > > Waterville > > > > > > Police > > > > > > > Department. " > > > > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that > involves > > > > > scarring > > > > > > of > > > > > > > the lung tissue. Often misdiagnosed, people with > Pulmonary > > > > > Fibrosis > > > > > > > experience extreme discomfort as the air sacs of the > lungs > > > > > > gradually > > > > > > > become replaced by fibrotic tissue. When the scar forms, > > the > > > > > tissue > > > > > > > becomes thicker causing an irreversible loss of the > > tissue's > > > > > > ability > > > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > > Fibrosis > > > > in > > > > > > the > > > > > > > United States. More than 200,000 people in the U.S. have > > been > > > > > > > diagnosed with the disease and an additional 50,000 are > > > likely > > > > > to > > > > > > be > > > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Patti, I have no idea. I know that they say the incidence of pulmonary fibrosis is increasing. That of course makes me wonder if they are just getting better at diagnosing it. That has been true of many diseases over the years. I know that there has been a spike in pf in the NYC area since 9/11/01 as so many of the people exposed to the dust from the WTC have ended up with fibrosis. I'm sure that they're are many people out there with this illness, especially in the early stages who have no idea they have it. Just like many of us they have some sob, cough and fatigue and chalk it up to being a little older and out of shape. That's what I did and I don't think I'm unique. Then for awhile my family doctor diagnosed asthma, bronchitis etc etc until I became so ill I landed in the ER, then strait to the ICU and that's where I was diagnosed accurately. However, I don't think there is any denying that the incidence of our lung disease is less than something like breast cancer. It is more common and (and this is a really important factor) it is more survivable. With early detection and treatment, women (and men) with breast cancer can go on to have normal healthy lives. There are treatments available for breast cancer. THERE IS NO TREATMENT FOR MOST FORMS OF INTERSTITIAL LUNG DISEASE. That's where the frustration comes in for me. Even early detection for us is of limited value because there's no treatment. Keep talking everyone, talk to anyone who will listen about this disease. Make some noise! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Thursday, December 4, 2008 3:44:41 AMSubject: Re: News Article MBAre the numbers so low (in comparison with breast cancer) with PF because we are not being diagnosed at the first sign.. I know in my case the xray showed PF in '99 and my doc just said oh, and that was it. Still have the xray result showing that. Nothing was done until i got tired of being short of breath and wanted to keep being active with the grandbabies and kids.That was in 7'06. I'm curious. How many people are out there not knowing.. patti, ipf 7'06, nj> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Patti, I have no idea. I know that they say the incidence of pulmonary fibrosis is increasing. That of course makes me wonder if they are just getting better at diagnosing it. That has been true of many diseases over the years. I know that there has been a spike in pf in the NYC area since 9/11/01 as so many of the people exposed to the dust from the WTC have ended up with fibrosis. I'm sure that they're are many people out there with this illness, especially in the early stages who have no idea they have it. Just like many of us they have some sob, cough and fatigue and chalk it up to being a little older and out of shape. That's what I did and I don't think I'm unique. Then for awhile my family doctor diagnosed asthma, bronchitis etc etc until I became so ill I landed in the ER, then strait to the ICU and that's where I was diagnosed accurately. However, I don't think there is any denying that the incidence of our lung disease is less than something like breast cancer. It is more common and (and this is a really important factor) it is more survivable. With early detection and treatment, women (and men) with breast cancer can go on to have normal healthy lives. There are treatments available for breast cancer. THERE IS NO TREATMENT FOR MOST FORMS OF INTERSTITIAL LUNG DISEASE. That's where the frustration comes in for me. Even early detection for us is of limited value because there's no treatment. Keep talking everyone, talk to anyone who will listen about this disease. Make some noise! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Thursday, December 4, 2008 3:44:41 AMSubject: Re: News Article MBAre the numbers so low (in comparison with breast cancer) with PF because we are not being diagnosed at the first sign.. I know in my case the xray showed PF in '99 and my doc just said oh, and that was it. Still have the xray result showing that. Nothing was done until i got tired of being short of breath and wanted to keep being active with the grandbabies and kids.That was in 7'06. I'm curious. How many people are out there not knowing.. patti, ipf 7'06, nj> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 jeane i like the way you said "victims relatives would be screaming to get the research going..."Pink Joyce IPF 3/06 Pennsylvania Subject: Re: News ArticleTo: Breathe-Support Date: Thursday, December 4, 2008, 5:17 AM Mine was finally diagnosed in 2005 but like I said I have reports from 2001 and 2002 showing that the radiologist informed the doctors that there were interstitial changes and scarring on both lungs and asking that more tests be done to find out what was going on. Both were ignored. In 2003 I had PFT's that were read as my having interstitial problems and the doctor who read them actually ignored that as well. It was not until I again changed doctors and my new one saw all of this stuff and sent me to another pulmo that anything was done to see what was going on. Even then it was just well you have interstitial lung disease and there is nothing that can be done for it. From there on my complaints of symptoms were met with "well that is the ILD". It was not till Hershey that this was met with real concern. My bet is that there are many more out there that are treated like this. For so many people it is treated like something trivial like a hang nail that is going to be there forever. This being the case, the question is how many people die from pneumonia and other complications never knowing their diseased lungs were as bad. For those the death certificate does not reflect that they died from the lung disease they had that caused the complications that killed them. Since they died under a doctor's care there would be no need for autopsies that would reveal the true number of people who are victims of this.If there were autopsies done on people who died from pulmonary illnesses of any kind I am positive that the true numbers would be a lot higher and the gravity of this truely come to light in a big way. Victim's relatives would be screaming to get research going and people would not allow their doctors to drop the ball out of fear that it is going to get them and might not have to.Jean> > > > > > >> > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > > Pulmonary> > > > > > > Fibrosis Research> > > > > > > > > > > > > > November 28, 2008> > > > > > > from press releases> > > > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse > team > > > and > > > > > the> > > > > > > Waterville Police Department recently joined forces to > > raise > > > > > more > > > > > > than> > > > > > > $10,000 in the first annual Bench Press for Pulmonary > > > Fibrosis.> > > > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > > pledges > > > > > that> > > > > > > were for per repetition of 135 pounds on the bench > press. > > > The > > > > > team > > > > > > set> > > > > > > up the bench outside Pulver Pavilion on the Colby > campus. > > > The > > > > > team> > > > > > > sold bracelets, passed out flyers, and educated the > student > > > > body > > > > > on> > > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > > pounds > > > > > as> > > > > > > many times as possible to raise money.> > > > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event > and > > > > helped > > > > > > man> > > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > > > "It's clear that this event meant a great deal to the > Colby > > > > > > lacrosse> > > > > > > family and in particular to Max. He was there for the > > entire > > > day> > > > > > > supporting his teammates while collecting the most > pledges > > > and > > > > > the> > > > > > > second most amount of money," Colby men's lacrosse coach > > Jon > > > > > > > > > > > > > said. "Max has proven that he has a passion for being > > > civically> > > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > > > also was happy to partner with the Waterville > > Police> > > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he > help > > > raise > > > > > > money> > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but > he > > > > > lifted > > > > > > the> > > > > > > weights right alongside our men," said. "His > > > > > involvement > > > > > > in> > > > > > > the event was a wonderful gesture on the part of the > > > Waterville > > > > > > Police> > > > > > > Department."> > > > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that > involves > > > > > scarring > > > > > > of> > > > > > > the lung tissue. Often misdiagnosed, people with > Pulmonary > > > > > Fibrosis> > > > > > > experience extreme discomfort as the air sacs of the > lungs > > > > > > gradually> > > > > > > become replaced by fibrotic tissue. When the scar forms, > > the > > > > > tissue> > > > > > > becomes thicker causing an irreversible loss of the > > tissue's > > > > > > ability> > > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > > Fibrosis > > > > in > > > > > > the> > > > > > > United States. More than 200,000 people in the U.S. have > > been> > > > > > > diagnosed with the disease and an additional 50,000 are > > > likely > > > > > to > > > > > > be> > > > > > > diagnosed in 2009.> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 i think there are a lot of people with ILD and don't know it i think i had it a long time before diagnosis SOB walking up hills--thought it was out of shape and/or heart diseasePink Joyce IPF 3/06 Pennsylvania Subject: Re: News ArticleTo: Breathe-Support Date: Thursday, December 4, 2008, 3:44 AM MBAre the numbers so low (in comparison with breast cancer) with PF because we are not being diagnosed at the first sign.. I know in my case the xray showed PF in '99 and my doc just said oh, and that was it. Still have the xray result showing that. Nothing was done until i got tired of being short of breath and wanted to keep being active with the grandbabies and kids.That was in 7'06. I'm curious. How many people are out there not knowing.. patti, ipf 7'06, nj> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 i also think the newer technologies -- high resolution cat scans have made a difference in diagnosis i wonder when HRCT beganPink Joyce IPF 3/06 Pennsylvania Subject: Re: News ArticleTo: Breathe-Support Date: Thursday, December 4, 2008, 3:44 AM MBAre the numbers so low (in comparison with breast cancer) with PF because we are not being diagnosed at the first sign.. I know in my case the xray showed PF in '99 and my doc just said oh, and that was it. Still have the xray result showing that. Nothing was done until i got tired of being short of breath and wanted to keep being active with the grandbabies and kids.That was in 7'06. I'm curious. How many people are out there not knowing.. patti, ipf 7'06, nj> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 MB I'm convinced its both up in frequency and being detected more frequently. We see the cases of doctors today who don't detect it and yet know they are more aware today than previously. As to up in frequency, our environment is just contaminated with more toxins of all sorts and we don't know which of those may be contributing to increases in this and other diseases. We learn to avoid one thing but there are ten more added to the air. A simple example. My ex mother in law has COPD and one thing that probably contributed heavily was owning an apartment prep business and cleaning lots of ovens with strong oven cleaners. However, more recently she used moth balls heavily. They are very toxic. While we don't use the oven cleaners, look at all the items today that have fragrances that once didn't. How many of those affect us? One I know specifically that effects many is these plug in room deodorizers. They may bother when active but when they are empty or no longer working they become more toxic to those impacted. In many cases we've made work environments safer, but then we've turned around and made our living environment less so. Look at the number of bad air days we had here this summer and well into fall. I even read an article in the past couple of days on something as simple as ragweed. We aren't imagining the bad allergy season from ragweed as being longer. The ragweed is growing better and lasting longer. This article attributes that to global warming and shows the science of how the subtle change helps ragweed thrive. Is it correct? Who knows. Not to be paranoid but look at all the electronics today. We do know CRT's contain contaminents in small quantities and assumed contained. Cell phones. The reality is until we have more answers, we just don't know. > > > > > > > > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > > Pulmonary > > > > > > > Fibrosis Research > > > > > > > > > > > > > > November 28, 2008 > > > > > > > from press releases > > > > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse > team > > > and > > > > > the > > > > > > > Waterville Police Department recently joined forces to > > raise > > > > > more > > > > > > than > > > > > > > $10,000 in the first annual Bench Press for Pulmonary > > > Fibrosis. > > > > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > > pledges > > > > > that > > > > > > > were for per repetition of 135 pounds on the bench > press. > > > The > > > > > team > > > > > > set > > > > > > > up the bench outside Pulver Pavilion on the Colby > campus. > > > The > > > > > team > > > > > > > sold bracelets, passed out flyers, and educated the > student > > > > body > > > > > on > > > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > > pounds > > > > > as > > > > > > > many times as possible to raise money. > > > > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event > and > > > > helped > > > > > > man > > > > > > > the bench press for the entire 12-hour event. > > > > > > > > > > > > > > " It's clear that this event meant a great deal to the > Colby > > > > > > lacrosse > > > > > > > family and in particular to Max. He was there for the > > entire > > > day > > > > > > > supporting his teammates while collecting the most > pledges > > > and > > > > > the > > > > > > > second most amount of money, " Colby men's lacrosse coach > > Jon > > > > > > > > > > > > > said. " Max has proven that he has a passion for being > > > civically > > > > > > > engaged on campus and I couldn't be more proud of him. " > > > > > > > > > > > > > > also was happy to partner with the Waterville > > Police > > > > > > > Department and police chief Joe Massey on the venture. > > > > > > > > > > > > > > " I cannot thank Chief Massey enough. Not only did he > help > > > raise > > > > > > money > > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but > he > > > > > lifted > > > > > > the > > > > > > > weights right alongside our men, " said. " His > > > > > involvement > > > > > > in > > > > > > > the event was a wonderful gesture on the part of the > > > Waterville > > > > > > Police > > > > > > > Department. " > > > > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that > involves > > > > > scarring > > > > > > of > > > > > > > the lung tissue. Often misdiagnosed, people with > Pulmonary > > > > > Fibrosis > > > > > > > experience extreme discomfort as the air sacs of the > lungs > > > > > > gradually > > > > > > > become replaced by fibrotic tissue. When the scar forms, > > the > > > > > tissue > > > > > > > becomes thicker causing an irreversible loss of the > > tissue's > > > > > > ability > > > > > > > to transfer oxygen into the bloodstream. > > > > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > > Fibrosis > > > > in > > > > > > the > > > > > > > United States. More than 200,000 people in the U.S. have > > been > > > > > > > diagnosed with the disease and an additional 50,000 are > > > likely > > > > > to > > > > > > be > > > > > > > diagnosed in 2009. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Jean...I think what you wrote below is the clue. because more and more people heard about it and started demanding that something gets done to help those victims. In my opinion, it's going to take "someone else" in each of our lives to do what we can't do...walk, organize, run, etc. For those who still can "do", I still think getting the word out may be the key. Of course we're still back where we start...'how'? is the question. One thing I CAN do is type. I type here everyday. I regret much beyond that, I'm not much help. It's difficult for me to remember the gal I "used" to be. Always in leadership, always the coordinator. Just like so many others on our board I'm sure. As you said so well, "...it silently zaps our strength and our voices..." It's not self-pity, it's just the facts! I hate this damn disease! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: News Article What an honest and very true explanation. I feel like i have so much to say wth this illness and want to shout it out to the world....but shouting means losing my breath and coughing. i wanted to organize a walk....but can't do the walk. I feel like this disease is slowly taking away my voice and my passions are being silenced...we all need to get together on this somehow.....but how> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Jean...I think what you wrote below is the clue. because more and more people heard about it and started demanding that something gets done to help those victims. In my opinion, it's going to take "someone else" in each of our lives to do what we can't do...walk, organize, run, etc. For those who still can "do", I still think getting the word out may be the key. Of course we're still back where we start...'how'? is the question. One thing I CAN do is type. I type here everyday. I regret much beyond that, I'm not much help. It's difficult for me to remember the gal I "used" to be. Always in leadership, always the coordinator. Just like so many others on our board I'm sure. As you said so well, "...it silently zaps our strength and our voices..." It's not self-pity, it's just the facts! I hate this damn disease! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: News Article What an honest and very true explanation. I feel like i have so much to say wth this illness and want to shout it out to the world....but shouting means losing my breath and coughing. i wanted to organize a walk....but can't do the walk. I feel like this disease is slowly taking away my voice and my passions are being silenced...we all need to get together on this somehow.....but how> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Jean...I think what you wrote below is the clue. because more and more people heard about it and started demanding that something gets done to help those victims. In my opinion, it's going to take "someone else" in each of our lives to do what we can't do...walk, organize, run, etc. For those who still can "do", I still think getting the word out may be the key. Of course we're still back where we start...'how'? is the question. One thing I CAN do is type. I type here everyday. I regret much beyond that, I'm not much help. It's difficult for me to remember the gal I "used" to be. Always in leadership, always the coordinator. Just like so many others on our board I'm sure. As you said so well, "...it silently zaps our strength and our voices..." It's not self-pity, it's just the facts! I hate this damn disease! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: News Article What an honest and very true explanation. I feel like i have so much to say wth this illness and want to shout it out to the world....but shouting means losing my breath and coughing. i wanted to organize a walk....but can't do the walk. I feel like this disease is slowly taking away my voice and my passions are being silenced...we all need to get together on this somehow.....but how> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 I thought something was wrong for at least eight years before I was diagnosed, but I never heard anything from the doctor(s) until this past September. Joyce T Rosenberg wrote: i think there are a lot of people with ILD and don't know it i think i had it a long time before diagnosis SOB walking up hills--thought it was out of shape and/or heart diseasePink Joyce IPF 3/06 Pennsylvania From: friend.patti <friend.patti (AT) yahoo (DOT) com>Subject: Re: News ArticleTo: Breathe-Support Date: Thursday, December 4, 2008, 3:44 AM MBAre the numbers so low (in comparison with breast cancer) with PF because we are not being diagnosed at the first sign.. I know in my case the xray showed PF in '99 and my doc just said oh, and that was it. Still have the xray result showing that. Nothing was done until i got tired of being short of breath and wanted to keep being active with the grandbabies and kids.That was in 7'06. I'm curious. How many people are out there not knowing.. patti, ipf 7'06, nj> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds > > > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville > > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >>Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
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