Below is a press release from the Coalition for Pulmonary Fibrosis regarding an advertising campaign they are launching to try to get Congress to approve more funding for research on Idiopathic Pulmonary Fibrosis? Bravo to the Coalition!
I’ll let you read the release, and then I’ll make some comments at the end.
Coalition for Pulmonary Fibrosis Launches Aggressive Ad Campaign Directed at United States Congress
Organization Urges Congress to Increase Federal Funding for Deadly, Incurable Disease
Click Here to View our Advertisements
San Jose, Calif. (Sept. 4, 2007) -The Coalition for Pulmonary Fibrosis (CPF) is launching an advertising campaign aimed at Members of Congress in support of its National IPF Awareness Week Sept. 22-29, 2007.
The campaign, which includes both print and online ads, will kick off on Sept. 6 and urge Members of Congress to take action to increase research funding for idiopathic pulmonary fibrosis (IPF), and to improve education and awareness of the disease in the medical community and general public. Prevalence of IPF has increased more than 150 percent since 2001. There is no FDA approved treatment and no cure for the disease that will claim 40,000 lives this year.
"The silence around IPF is deafening," said Mark Shreve, chief executive officer of the CPF. "This campaign represents the voices of thousands of patients who are too debilitated to travel to Capitol Hill during IPF Awareness Week and speak for themselves."
The campaign will appear in print in Congressional Quarterly's CQ Today on Sept. 6, 12, 20 and 25, and in Congressional Quarterly's online publication HealthBeat the weeks of Sept. 10 and 24.
"This campaign is a critical component of IPF Awareness Week to advance our efforts to represent the needs of this community of patients and researchers as aggressively as possible," said Shreve. "Our goal is to get the attention of Members of Congress and their staffs to gain their support for increased funding for research, education and awareness while also furthering legislation that impacts IPF patients and their families."
The ad campaign was created pro bono by Jeff Hardy, owner of Floor Eighty-Four Studio in Los Angeles, Calif. Hardy recently lost his grandfather to IPF.
To view the CPF's ads, please click here.
About Idiopathic Pulmonary Fibrosis (IPF)
IPF 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 IPF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. IPF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.
About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF), 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 pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of IPF issues; and works to improve awareness of IPF 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 13,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with pulmonary fibrosis. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
I’m very excited about the work that the Coalition is doing to advance research into pulmonary fibrosis. The more we learn about pulmonary fibrosis, idiopathic or genetic, the better for everyone. The Coalition does an awesome job of advocacy. There will be things learned that will help HPS’ers.
However, because most people develop pulmonary fibrosis for no known reason, everyone seems very stuck on “IPF.” But all that really means is that research hasn’t figured out the cause yet. As funding increases for research, that will change. There is a cause. There is a reason. I can’t help but wonder if this terminology, in the end, will be limiting.
Those of us with pulmonary fibrosis because of Hermansky-Pudlak Syndrome have a lot of offer pulmonary fibrosis researchers. Because most pulmonary fibrosis is idiopathic, it’s impossible to study how the disease develops early on, or how it might be detected earlier. Yet we know that people with HPS types 1 and 4 develop pulmonary fibrosis. We might not know exactly when, but we’ve got a pretty good idea it will happen. We are a perfect model for research that would benefit not only HPS’ers, but the pulmonary fibrosis community as a whole.
Indeed some of our researchers at NIH are working on some really exciting stuff. When they publish it, you can be sure I’ll be blogging about it. So, why would you limit funding to IPF? It seems like a matter of semantics to me that has the potential to get in the way.
For years now the HPS Network has been working hard to even be included in medical text books as a cause of pulmonary fibrosis. I think we’ve made some headway there. Now one of the challenges I’m working on this year is to find ways to make “the list of possible causes of pulmonary fibrosis” in sources of information geared towards patients.
It’s not unusual for HPS’ers to find us only after being diagnosed with IPF. And often that’s by sheer dumb luck. I can’t help but wonder how many HPS’ers there might be in the general pulmonary fibrosis population who simply haven’t connected their albinism to their lung disease?
I’ll let you read the release, and then I’ll make some comments at the end.
Coalition for Pulmonary Fibrosis Launches Aggressive Ad Campaign Directed at United States Congress
Organization Urges Congress to Increase Federal Funding for Deadly, Incurable Disease
Click Here to View our Advertisements
San Jose, Calif. (Sept. 4, 2007) -The Coalition for Pulmonary Fibrosis (CPF) is launching an advertising campaign aimed at Members of Congress in support of its National IPF Awareness Week Sept. 22-29, 2007.
The campaign, which includes both print and online ads, will kick off on Sept. 6 and urge Members of Congress to take action to increase research funding for idiopathic pulmonary fibrosis (IPF), and to improve education and awareness of the disease in the medical community and general public. Prevalence of IPF has increased more than 150 percent since 2001. There is no FDA approved treatment and no cure for the disease that will claim 40,000 lives this year.
"The silence around IPF is deafening," said Mark Shreve, chief executive officer of the CPF. "This campaign represents the voices of thousands of patients who are too debilitated to travel to Capitol Hill during IPF Awareness Week and speak for themselves."
The campaign will appear in print in Congressional Quarterly's CQ Today on Sept. 6, 12, 20 and 25, and in Congressional Quarterly's online publication HealthBeat the weeks of Sept. 10 and 24.
"This campaign is a critical component of IPF Awareness Week to advance our efforts to represent the needs of this community of patients and researchers as aggressively as possible," said Shreve. "Our goal is to get the attention of Members of Congress and their staffs to gain their support for increased funding for research, education and awareness while also furthering legislation that impacts IPF patients and their families."
The ad campaign was created pro bono by Jeff Hardy, owner of Floor Eighty-Four Studio in Los Angeles, Calif. Hardy recently lost his grandfather to IPF.
To view the CPF's ads, please click here.
About Idiopathic Pulmonary Fibrosis (IPF)
IPF 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 IPF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. IPF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.
About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF), 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 pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of IPF issues; and works to improve awareness of IPF 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 13,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with pulmonary fibrosis. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
I’m very excited about the work that the Coalition is doing to advance research into pulmonary fibrosis. The more we learn about pulmonary fibrosis, idiopathic or genetic, the better for everyone. The Coalition does an awesome job of advocacy. There will be things learned that will help HPS’ers.
However, because most people develop pulmonary fibrosis for no known reason, everyone seems very stuck on “IPF.” But all that really means is that research hasn’t figured out the cause yet. As funding increases for research, that will change. There is a cause. There is a reason. I can’t help but wonder if this terminology, in the end, will be limiting.
Those of us with pulmonary fibrosis because of Hermansky-Pudlak Syndrome have a lot of offer pulmonary fibrosis researchers. Because most pulmonary fibrosis is idiopathic, it’s impossible to study how the disease develops early on, or how it might be detected earlier. Yet we know that people with HPS types 1 and 4 develop pulmonary fibrosis. We might not know exactly when, but we’ve got a pretty good idea it will happen. We are a perfect model for research that would benefit not only HPS’ers, but the pulmonary fibrosis community as a whole.
Indeed some of our researchers at NIH are working on some really exciting stuff. When they publish it, you can be sure I’ll be blogging about it. So, why would you limit funding to IPF? It seems like a matter of semantics to me that has the potential to get in the way.
For years now the HPS Network has been working hard to even be included in medical text books as a cause of pulmonary fibrosis. I think we’ve made some headway there. Now one of the challenges I’m working on this year is to find ways to make “the list of possible causes of pulmonary fibrosis” in sources of information geared towards patients.
It’s not unusual for HPS’ers to find us only after being diagnosed with IPF. And often that’s by sheer dumb luck. I can’t help but wonder how many HPS’ers there might be in the general pulmonary fibrosis population who simply haven’t connected their albinism to their lung disease?
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