CPF Announces Dates for Eighth Annual National Pulmonary Fibrosis Awareness Week

Jun 22, 2010, 11:20 ET from Coalition for Pulmonary Fibrosis

2010 Awareness Efforts Set for PF Week Sept. 11-18

SAN JOSE, Calif., June 22 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today it has set its 2010 National Pulmonary Fibrosis (PF) Awareness Week for September 11-18, 2010.  The primary goals of this year's activity are to ensure passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA), and to raise awareness of PF issues to Members of Congress and in communities nationwide.

Specifically, the CPF is asking its national membership and others affected by PF to take action on the Pulmonary Fibrosis Research Enhancement Act (PFREA), H.R. 1079, by meeting with their Members in person or by emailing, calling or mailing letters to them. .  

The CPF will celebrate National PF Awareness Week with more than 20 patients and patient advocates on Capitol Hill, and with hundreds of patients and family members reaching out to their own Members in their districts nationwide that week.  In 2009, the organization received recognition for its National PF Awareness Week's efforts when it was a finalist for a national advocacy award by PR Week.  

The CPF has been working closely with Congressman Brian Baird (D-WA) and Congressman Mike Castle (R-DE) on PFREA, the lead sponsors of the bill.  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."

As part of the National PF Week efforts, there will be a walk in Washington, D.C., not far from the Capitol steps, to bring attention and awareness to pulmonary fibrosis and the millions of lives it touches globally.  This year, 2010, has been proclaimed international "Year of the Lung" by the American Thoracic Society (ATS) and a coalition of like respiratory societies around the globe.  The CPF is partnering with this coalition in a concerted effort to bring attention to lung issues. National PF Week will continue that effort.  

This focused effort on the part of the CPF is moving into its eighth year.  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 years, the CPF and its advocates have met with hundreds of Members of Congress. 127 House Members are now supporters of the current bill.

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, please visit the CPF at www.coalitionforpf.org, call us at 888-222-8541, or email us at info@coalitionforpf.org.  

Disparity of Federal Funding

The disparity of federal funds put towards research in pulmonary fibrosis is profound.  This year, less than $23 million will be spent on a disease that affects 128,000 people compared with hundreds of millions spent on diseases that affect a small fraction of that number of patients.  This while the disease takes 40,000 lives each year - the same number as breast cancer (40,000). 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 (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's Campaign ACT

Since 2002, the CPF has been leading a national advocacy effort directed toward Congress, the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) 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. The CPF as well as its National PF Awareness Week have been formally recognized on Capitol Hill, most recently with the passage of H.R. 182 in 2007, which was the first-ever Congressional recognition of the need for increased research funding and improved public awareness of PF in the United States.  This resolution laid the groundwork for the introduction of the Pulmonary Fibrosis Research Enhancement Act in 2008 and again in 2009.  

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 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 www.coalitionforpf.org or call (888) 222-8541.

SOURCE Coalition for Pulmonary Fibrosis



RELATED LINKS

http://www.coalitionforpf.org