This is really cool! It's a creative way to get the word out about pulmonary fibrosis. I love the idea!
Many people with HPS get diagnosed with pulmonary fibrosis and don't know they have HPS. It's a real problem because often doctors want to do an open lung biopsy to diagnose pulmonary fibrosis. If you don't know you have a bleeding disorder (as people with HPS do) bad things can happen. Unfortunately, we don't always get listed under the causes of pulmonary fibrosis - either because people don't know about us, or they just think we're too rare to merit a mention. Given the life and death implications, that's a little frustrating.
Still, as we increase knowledge about HPS among docs - and as patients begin to have words by which to do their own research, it will help.
One thing I wanted to mention for HPS'ers, is that the press release mentions a very low number for qualifying for a lung transplant. Now that we've had six successful HPS lung transplants and proved the bleeding issues could be treated, I suspect a higher percentage of HPS'ers would be good transplant candidates because we are a younger population. Still, a transplant is hardly a cure. There aren't enough spare lungs to go around, and even if you get one, you still have to fight rejection and other complications the rest of your life. A cure that would keep us all from needing transplants in the first place would be a much preferable solution. Grin!
Also, anything that benefits pulmonary fibrosis awareness, and thus benefits pulmonary fibrosis research and patient care, is good for everyone with PF, regardless of cause.
For that reason, I'm really excited about this. How nice it would be if the words "pulmonary fibrosis" were as well-known as other health issues. Forget HPS! If I tell someone I have pulmonary fibrosis, they get this blank stare because no one knows what it is, or how deadly it can be.
CPF, Advocates Drive Home the Message for Pulmonary Fibrosis
Fleet of More than 30 Trucks Make Trips Daily Cross Country Potentially Reaching Millions, Jumbotron Ad on Busy CA Freeway Reaches More than 130,000 People Daily
SAN JOSE, Calif., July 29 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today a nationwide advertising campaign to spread the word about Pulmonary Fibrosis (PF) is underway in an untraditional setting – on the nation's interstates. Together, a billboard ad and truck ads are part of a nationwide campaign to raise eyebrows and awareness of the deadly lung disease.
The billboard ad that has the potential to reach millions of people each week delivers a message about PF as more than 130,000 people pass a jumbotron (electronic advertising billboard) billboard on Northern California's Interstate 80 each day.
The jumbotron ad copy asks "How Long Have You Had That Cough?" and then lists the CPF name followed by the web address, www.cough-cough.org . The ad space was donated by Terry Long and Bruce Seidel in honor of Seidel's friend, Bob O'Rourke, who is suffering from PF and currently awaiting a life-saving lung transplant for the disease. Transplant is the only known cure for the disease, however less than one percent of the 128,000 who suffer from it in the U.S. qualify. O'Rourke has been featured in national media coverage over the last several weeks including a story that appeared on NBC's The TODAY Show.
"I am pleased I could share the message with people traveling the highway in California to try and increase awareness of this horrible lung disease," said Terry Long, owner of the Jumbotron billboard on Interstate 80.
Millions of drivers and passengers see Inman Trucking's more than 30 tractor trailer rigs driving roundtrip from North Carolina to California. The ad on the trucks of national carrier says simply "Stop Pulmonary Fibrosis" and includes the CPF name and a different web address, www.gaspingforbreath.org.
Both ad web addresses take visitors to the CPF's website -http://www.coalitionforpf.org/cpf_news_detailes.php?id=454
"We admit this is not a typical advertising campaign," says CPF CEO Mishka Michon. "We think it's just different enough, though, that it may get some traction in helping build awareness of PF across the country. We also hope that other companies with media to donate will want to help spread the word. It's literally a life-or-death story, but we need a larger forum in which to tell it."
The founder and President of Inman Trucking, Tommy Spivey, also suffers from PF and wanted to get the word out to all who see his trucks on the road. "I want everyone to know about this disease so that we can do something about it," he said. "It may not be soon enough to save my life, but hopefully building awareness will lead to increased funding for the disease and others will be saved," he said. Spivey donated the ads in memory of PF patient Anita Burgin who became friends with Spivey through the CPF and died recently as well as other patients who have lost their fights to the disease.
Jeff Berry, President and CEO of People's Branding, Ltd., donated his time and talents to create the billboard ad as well as other ads for the CPF campaign and thinks the message is pervasive. "I helped the CPF develop a series of banners, posters and outdoor ads with the provocative headline: 'How long have you had that cough?' to make people aware of this terrible disease, how it could strike anyone, and get them to go to the website for more information. It's the kind of thing you might say to someone you care about, and who may not be aware that something as innocent seeming as a persistent cough might be the beginning of something far more serious," said Berry.
The trucking company's ads were produced in partnership with Berry by Chris Prince of Wilmington, North Carolina, a friend of Tommy Spivey.
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis – and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 24,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
SOURCE Coalition for Pulmonary Fibrosis
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Many people with HPS get diagnosed with pulmonary fibrosis and don't know they have HPS. It's a real problem because often doctors want to do an open lung biopsy to diagnose pulmonary fibrosis. If you don't know you have a bleeding disorder (as people with HPS do) bad things can happen. Unfortunately, we don't always get listed under the causes of pulmonary fibrosis - either because people don't know about us, or they just think we're too rare to merit a mention. Given the life and death implications, that's a little frustrating.
Still, as we increase knowledge about HPS among docs - and as patients begin to have words by which to do their own research, it will help.
One thing I wanted to mention for HPS'ers, is that the press release mentions a very low number for qualifying for a lung transplant. Now that we've had six successful HPS lung transplants and proved the bleeding issues could be treated, I suspect a higher percentage of HPS'ers would be good transplant candidates because we are a younger population. Still, a transplant is hardly a cure. There aren't enough spare lungs to go around, and even if you get one, you still have to fight rejection and other complications the rest of your life. A cure that would keep us all from needing transplants in the first place would be a much preferable solution. Grin!
Also, anything that benefits pulmonary fibrosis awareness, and thus benefits pulmonary fibrosis research and patient care, is good for everyone with PF, regardless of cause.
For that reason, I'm really excited about this. How nice it would be if the words "pulmonary fibrosis" were as well-known as other health issues. Forget HPS! If I tell someone I have pulmonary fibrosis, they get this blank stare because no one knows what it is, or how deadly it can be.
CPF, Advocates Drive Home the Message for Pulmonary Fibrosis
Fleet of More than 30 Trucks Make Trips Daily Cross Country Potentially Reaching Millions, Jumbotron Ad on Busy CA Freeway Reaches More than 130,000 People Daily
SAN JOSE, Calif., July 29 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today a nationwide advertising campaign to spread the word about Pulmonary Fibrosis (PF) is underway in an untraditional setting – on the nation's interstates. Together, a billboard ad and truck ads are part of a nationwide campaign to raise eyebrows and awareness of the deadly lung disease.
The billboard ad that has the potential to reach millions of people each week delivers a message about PF as more than 130,000 people pass a jumbotron (electronic advertising billboard) billboard on Northern California's Interstate 80 each day.
The jumbotron ad copy asks "How Long Have You Had That Cough?" and then lists the CPF name followed by the web address, www.cough-cough.org . The ad space was donated by Terry Long and Bruce Seidel in honor of Seidel's friend, Bob O'Rourke, who is suffering from PF and currently awaiting a life-saving lung transplant for the disease. Transplant is the only known cure for the disease, however less than one percent of the 128,000 who suffer from it in the U.S. qualify. O'Rourke has been featured in national media coverage over the last several weeks including a story that appeared on NBC's The TODAY Show.
"I am pleased I could share the message with people traveling the highway in California to try and increase awareness of this horrible lung disease," said Terry Long, owner of the Jumbotron billboard on Interstate 80.
Millions of drivers and passengers see Inman Trucking's more than 30 tractor trailer rigs driving roundtrip from North Carolina to California. The ad on the trucks of national carrier says simply "Stop Pulmonary Fibrosis" and includes the CPF name and a different web address, www.gaspingforbreath.org.
Both ad web addresses take visitors to the CPF's website -http://www.coalitionforpf.org/cpf_news_detailes.php?id=454
"We admit this is not a typical advertising campaign," says CPF CEO Mishka Michon. "We think it's just different enough, though, that it may get some traction in helping build awareness of PF across the country. We also hope that other companies with media to donate will want to help spread the word. It's literally a life-or-death story, but we need a larger forum in which to tell it."
The founder and President of Inman Trucking, Tommy Spivey, also suffers from PF and wanted to get the word out to all who see his trucks on the road. "I want everyone to know about this disease so that we can do something about it," he said. "It may not be soon enough to save my life, but hopefully building awareness will lead to increased funding for the disease and others will be saved," he said. Spivey donated the ads in memory of PF patient Anita Burgin who became friends with Spivey through the CPF and died recently as well as other patients who have lost their fights to the disease.
Jeff Berry, President and CEO of People's Branding, Ltd., donated his time and talents to create the billboard ad as well as other ads for the CPF campaign and thinks the message is pervasive. "I helped the CPF develop a series of banners, posters and outdoor ads with the provocative headline: 'How long have you had that cough?' to make people aware of this terrible disease, how it could strike anyone, and get them to go to the website for more information. It's the kind of thing you might say to someone you care about, and who may not be aware that something as innocent seeming as a persistent cough might be the beginning of something far more serious," said Berry.
The trucking company's ads were produced in partnership with Berry by Chris Prince of Wilmington, North Carolina, a friend of Tommy Spivey.
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis – and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 24,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
SOURCE Coalition for Pulmonary Fibrosis
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RELATED LINKS
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