SAN JOSE, Calif., Sept. 21 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis today announced 2007 National IPF Awareness Week activities that include a patient event this weekend in Washington, D.C., a congressional reception that includes a tribute to late Rep. Charlie Norwood, and a patient meeting with the National Institutes of Health. More than 40 Idiopathic Pulmonary Fibrosis (IPF) patients and family members will be on the Hill next week to meet with Members of Congress and their staffs about the urgent need for increased awareness and funding for the deadly disease that has no FDA approved treatment, no known cause and no cure. The disease claims 40,000 lives a year, the same as breast cancer.
"National IPF Awareness Week is an important time for patients and families who desperately need to get the attention of Members of Congress. Their work this week will help to increase awareness of a lethal disease that the average American has never heard of until they or someone they love receives the diagnosis," said Mark Shreve, chief executive officer of the CPF.
Members of Congress Who've Lost Family to Pulmonary Fibrosis Host IPF Week Reception
As part of IPF Week, Congressmen Brian Baird, Mike Castle and Nathan Deal are joining forces from across the aisle to help their fellow Members of Congress understand the disease that has taken the lives of their family members. Rep. Baird (D-WA) lost his father to the disease, Rep. Castle (R-DE) lost his brother and his sister to pulmonary fibrosis and Rep. Nathan Deal (R- GA) was a friend and colleague to the late Rep. Charlie Norwood and recently introduced an IPF resolution. The Members of Congress will jointly host a reception on Capitol Hill in the Cannon Caucus Room in the Cannon Building on the House side of the Capitol on Sept. 25 from 2:00 p.m. to 3:30 p.m. Members of Congress, their staffs, and members of the media are invited.
"There is no question that we need to support the efforts of the CPF and of researchers who are striving to find a cause and cure for this debilitating and devastating disease," said Congressman Brian Baird (D-WA) recently introduced House Concurrent Resolution 182 (H. Con. Res. 182) with Congressman Nathan Deal (R-GA) to increase awareness about the disease.
"This is why the work of the CPF and the IPF community is so critical," said Rep. Baird. "Now, more than ever, we need to increase the level of awareness around this deadly disease and urge support for research funding in this area."
"I don't know of any other disease in this country with as many people dying that has less notoriety and less support for it than IPF," said Rep. Castle during a recent conference call for the CPF's advocates. "I don't know another disease that has as much mystery to it."
The Late Congressman Charlie Norwood's Widow to Talk to Legislators About Need
Gloria Norwood, widow of Congressman Charlie Norwood (R-GA) who died in February, a few years following a lung transplant for pulmonary fibrosis, will speak to Members of Congress and their staffs at the reception about the urgent need for attention and funding for the disease. She will also accept an award from the CPF in tribute to her husband's work in forwarding the cause. Congressman Norwood was the first Member of Congress to introduce IPF legislation in Congress, working closely with the CPF.
Other IPF Week Activities
The CPF and more than 40 advocates will meet with Members of Congress and their staffs Sept. 24-27. In addition, the CPF will hold a "Living with IPF" patient seminar in partnership with INOVA Fairfax Medical Center. It will be held at the Hyatt Regency Capitol Hill at 400 New Jersey Avenue in Washington, D.C. on Sunday, Sept. 23, 2007 from 11:00 a.m. to 3:30 p.m. On Sept. 26, patients will meet with leaders from the National Institutes of Health about their current efforts in the disease and will urge them to step things up in IPF research.
Disparity of Federal Funding
The disparity of federal funds put towards research in pulmonary fibrosis is profound. This year, less than $14 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.
Background on IPF
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 http://www.coalitionforpf.org or call (888) 222-8541.
|SOURCE Coalition for Pulmonary Fibrosis|
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