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CPF Announces Dates for Seventh Annual National Pulmonary Fibrosis Awareness Week
Date:6/25/2009

2009 Awareness Efforts Set for August and September, PF Week Sept. 14 - 21

SAN JOSE, Calif., June 25 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today it has scheduled its 2009 National Pulmonary Fibrosis (PF) Awareness Week for September 14-21, 2009. The primary goals of this year's activity are to ensure passage of the PFREA, and 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 of Congress in their home districts during the August congressional recess. Following district outreach, the CPF will celebrate National PF Awareness Week September 14-21 and meet with Members who are not yet co-sponsors of the bill.

The CPF has been working closely with Congressman Brian Baird (D-WA) and Congressman Mike Castle (R-DE) on this historic, bi-partisan legislation that 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. The PFREA was introduced in the U.S. House of Representatives in February and is expected to soon be introduced in the U.S. Senate.

"We cannot emphasize enough the importance of having patients and their families meet with their Members of Congress. There is no better way to gain support for this cause than to have patients who are affected share their stories with their Member of Congress and ask them, face-to-face for their support of this critical bill to help find answers to this deadly disease," said Mishka Michon, CPF CEO.

National PF Awareness activities include:

  • A Call-to-Action to patients, families, caregivers and all affected by PF to join the CPF's Campaign ACT advocacy program
  • Patient and CPF member in-district meetings, calls and emails to Members of Congress in support of the PFREA
  • Local and regional grassroots efforts by patients and CPF members to raise awareness in their local communities by sharing their stories with the local media
  • CPF staff meetings on Capitol Hill to fight for passage of the PFREA and raise awareness of PF and the need for increased attention and federal funding for the disease

The CPF has celebrated National PF Awareness Week for the past six years, visiting representatives on Capitol Hill with patients and family members participating and telling their stories. Over the years, the CPF and its advocates have met with hundreds of Members of Congress. As a result of these efforts, the CPF was recognized for its work on behalf of the PF community through the passage H.R. 42, which passed the House unanimously in 2007.

This year, the CPF grassroots campaign with in-district visits is expected to help increase the number of co-sponsors for H.R. 1079. There are currently 32 co-sponsors of the bill.

CPF members and others affected by PF are encouraged to meet with their Members of Congress during the August recess. The U.S. House of Representatives recess is scheduled for August 3rd through September 4th. The U.S. Senate will recess from August 10 through September 7th.

PF patients, families and those affected by PF can help with 2009 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, 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 19,000 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.


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SOURCE Coalition for Pulmonary Fibrosis
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