SAN JOSE, Calif., Oct. 7 /PRNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) today announced results from its second annual National IPF Awareness Week (Sept. 26 - Oct. 1, 2004). The CPF kicked off awareness week activities with its “B.I.G.” (Breathing is Glorious!) 5K race/walk in Ann Arbor, Mich. on Sept. 26. The B.I.G. Race raised more than $110,000 to support all those affected by IPF and to fund CPF’s patient and physician education, support, research, and advocacy programs throughout the country.
“We more than doubled our goal of raising $50,000 during awareness week,” said Mark Shreve, chief operating officer of the CPF. “The B.I.G. race represents the largest fundraising event in the United States dedicated to helping the IPF community. We’re incredibly grateful to the 300-plus race participants, those who contributed, and of course the many volunteers who helped make it such a success.”
Equally successful were the CPF’s advocacy efforts on Capitol Hill during IPF Awareness Week. IPF patients and CPF representatives met with more than 60 members of Congress in Washington, D.C., to discuss the importance of funding IPF research and the need to advance IPF-related legislation currently before Congress. The highlight of the week were a number of meetings with Rep. Norwood (R-GA), who recently announced he has IPF and just days ago underwent lung transplant surgery to save his life.
“Congressman Norwood was extremely generous with his time and very supportive of our efforts to raise awareness of IPF and to advocate for increased federal funding for research to find a cure,” said Shreve. “Our membership knows first hand how difficult the fight against IPF can be, especially in such a public role, and we truly appreciate his willingness to share his personal story and aid our efforts on Capitol Hill.”
Prior to his surgery Rep. Norwood drafted a Concurrent Resolution that will be introduced on the House floor, acknowledging the need to increase awareness of IPF and recognizing the CPF for it’s efforts advocating on behalf of those fighting IPF. This was an important step in furthering CPF’s mission to inform policy makers of the importance of addressing the concerns of IPF patients and caregivers.
The CPF also received a number of commitments from members of Congress to support IPF-related legislation, including “Ending the Medicare Disability Waiting Period Act of 2004" (S. 2566; H.R. 104).
“Our efforts last year helped build a base for IPF-awareness in Washington, this year we built on that improved awareness by focusing on specific legislation that will help IPF patient and families,” said Shreve. “The median survival rate for IPF patients is less than three years, yet IPF patients under 65 must wait two years to qualify for Medicare coverage and patients may not survive that long due to the relentless progression of the disease.”
Other key meetings included: Rep. Joe Barton (R-TX), Chair of the Energy and Commerce Committee; Rep. Michael Bilirakis (R- FL), Chair of Subcommittee on Health; Rep. Ted Strickland (D-OH); and Rep. Gene Greene (D-TX), sponsor of H.R. 104.
State proclamations were issued for IPF Awareness Week or Month by the following state governors: Georgia, Texas, Oklahoma, Massachusetts and California.
About Idiopathic Pulmonary Fibrosis
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 83,000 Americans suffer from IPF, and there is currently no known cause or cure. An estimated 31,000 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 further education, patient support and research efforts for pulmonary fibrosis, specifically idiopathic pulmonary fibrosis (IPF). The CPF is governed by the nation’s leading pulmonologists, individuals affected by pulmonary fibrosis, medical research professionals and advocacy organizations. The CPF’s nonprofit partners include the Mary D. Harris Memorial Foundation, The Pulmonary Paper, the Caring Voice Coalition, Second Wind Lung Transplant Association, the National Coalition of Autoimmune Patient Groups, and more than 30 leading IPF treatment and research centers nationwide. For more information on CPF, please visit http://www.coalitionforpf.org/ or call (888) 222-8541.
Coalition for Pulmonary Fibrosis
CONTACT: Mark Shreve of Coalition for Pulmonary Fibrosis,+1-888-222-8541, info@coalitionforpf.org
Web site: http://www.coalitionforpf.org/