Saturday, September 11, 2010

National Pulmonary Fibrosis Awareness Week

Do me a favor. Take the deepest breath you can take; let half of it out. Take another breath, as deep as you can; let half of THAT out. Keep going until it hurts too much to continue. Imagine that feeling, coupled with a dry, papery cough and that nagging sensation that you can't quite clear your throat. Now try to think, move, or concentrate.

That's what Pulmonary Fibrosis feels like. It doesn't get better and it never goes away. The lungs you see pictured here are an example of one PF lung, and one that is still healthy.

This week is National Pulmonary Fibrosis Awareness Week. Below is the text of the National Coalition for Pulmonary Fibrosis' email kicking if off. I hope the information is helpful.

Coalition for Pulmonary Fibrosis


Culver City, Calif. - The Coalition for Pulmonary Fibrosis (CPF) kicks off the 8th annual National Pulmonary Fibrosis (PF) Awareness Week Sept. 11 to 18. The primary goals of this year's activity are to ensure passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA), in the Senate and the House, and to raise awareness of Pulmonary Fibrosis issues in communities nationwide.

Specifically, the CPF is asking its national membership and others affected by PF to email, call, or mail letters to their members of Congress to encourage their votes for PFREA. The CPF's objectives while on the Hill are to add co-sponsors to the 136 on the House bill as of this date, and to begin to build a list of Senate co-sponsors.

National PF Awareness Week will mean more than 50 visits by patients and patient advocates with legislators on Capitol Hill. Hundreds of other patients and family members will reach out to their own members of Congress in their home districts nationwide that week.

The CPF has worked closely with Congressmen Brian Baird (D-WA) and Mike Castle (R-DE) on the House version (H.R. 1079) and with Senators Patty Murray and Mike Crapo on the Senate version (S. 3073). This historic, bi-partisan legislation would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.

"It takes each PF patient, each family member and their circle of friends to reach out to Congress and get this bill passed," said Mishka Michon, Chief Executive Officer of the CPF. "Having the voice of the patient community heard loud and clear will make things happen to bring attention and awareness to PF in Washington and beyond."

This year, 2010, has been proclaimed international "Year of the Lung" by the American Thoracic Society (ATS) and respiratory societies around the globe. The CPF is partnering with this alliance in a concerted effort to bring attention to lung issues. National PF Week will continue that effort.

The progression from a bill of recognition of the disease, H. Con Res 182, which was passed in 2007 to a bill establishing funding for PF research, is indicative of increased responsiveness on the part of Congress. Over the past eight years, the CPF and its advocates have met with hundreds of Members of Congress.

PF patients, families and those affected by PF can help with 2010 awareness efforts and help gain passage of the PFREA by joining the CPF's advocacy campaign, Campaign ACT. For further information, visit the CPF at, call 888-222-8541, or email

Disparity of Federal Funding

The disparity of federal funds for research in pulmonary fibrosis is profound. This year, less than $23 million will be spent on this disease which affects 128,000 people compared with hundreds of millions of dollars spent on diseases that affect a small fraction of that number. This, while the disease takes 40,000 lives each year - the same number as breast cancer. H.R. 1079 will provide much needed help for PF patients by creating the first national patient registry and providing support for research.

About Pulmonary Fibrosis (PF)

Pulmonary Fibrosis 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. There is currently no known cause or cure. Approximately one percent of patients' lives are extended through lung transplants. 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's Campaign ACT

Since 2002, the CPF has been leading a national advocacy effort directed toward Congress, the National Institutes of Health and the Centers for Disease Control to increase research funding for PF and accelerate efforts to find a cure for this devastating lung disorder. The CPF has also actively advocated for passage of legislation important to the PF community in the areas of Medicare and Social Security coverage.

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 monprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 23,000 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 or call (888) 222-8541.

2 comments ]:[ Add your comment:

Anonymous said...

Thank you Chrissy for sharing this. I knew very little about CPF but through reading your post, I know a little bit more. I did try the breathing as you said. I simply cannot imagine every breath being that way.

I will do what I can as a friend, as someone who cares about things like this to help.

Sending prayers, strength and healing vibes your way, hoping for a miracle of some kind for you and the thousands of others who struggle for every breath due to CPF.

Anonymous said...

I linked to your post via my blogspot. Hope that is okay, because it's one small way I can help spread the word.

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