Coalition for Pulmonary Fibrosis Celebrates Landmark Year for Awareness, Advocacy, Research
SAN JOSE, Calif. Dec. 31 — The Coalition for Pulmonary Fibrosis (CPF) calls 2008 a year of substantial progress in advocacy, research support and awareness of a fatal disease that has no known cause, no FDA-approved treatment, and no cure — Pulmonary Fibrosis (PF).
The CPF was able to double its research grant funding through a partnership with the American Thoracic Society (ATS). The CPF/ATS partnership enables the search for treatments to assist patients who are suffering from this relentless and ultimately fatal disease. As many as 40,000 patients die each year to PF - the same number as are lost to breast cancer.
The organization drove a national advocacy effort leading to the introduction of the Pulmonary Fibrosis Research Enhancement Act (PFREA), and greatly enhanced its resources via expanded Internet campaigns, a fully redesigned website (http://www.coalitionforpf.org) and the publication of comprehensive, peer-reviewed patient education materials.
The landmark PFREA was introduced on July 23, 2008 in the U.S. House of Representatives by Rep. Brian Baird (D-WA) and Rep. Mike Castle (R-DE). The PFREA is the first legislation specifically seeking congressional funding for PF research, and would authorize $16 million to create a comprehensive national registry to help in understanding the cause and progression of the disease, which in turn would allow for improved standards of care and accelerated research. The bill also carries provisions to improve public awareness of PF and creates a National PF Advisory Board.
Rep. Baird lost his father to PF, and Rep. Castle lost his brother and sister to the devastating disease. The bill is expected to be reintroduced in the House early in 2009 and soon after in the Senate.
"We are very excited about the potential for congressional support which will accelerate efforts to conquer PF — a truly devastating disease that has seen a 156 percent increase in prevalence in the last six years. This is truly a significant move forward, both for patients currently fighting PF, and for all those who will be diagnosed in the future," said Mishka Michon, chief executive officer of the CPF.
Also in 2008, the CPF initiated its first Internet marketing campaign which included the launch of a new state-of-the-art website, and a new web-based advocacy program. These tools will dramatically improve the organization's ability to communicate with patients, researchers and caregivers, to increase public awareness of PF and to raise new funds to advance the work being done by the CPF. The Internet advocacy program had an immediate and dramatic impact on the CPF's efforts to pass the PFREA in the House. Through the efforts of CPF members communicating with their members of Congress, 30 House co-sponsors have been secured to date.
The majority of the CPF's research funding is managed via its partnership with ATS, and grants are awarded through a rigorous peer-review process administered by ATS. As a result of 2008 fundraising, the CPF will offer two new grant opportunities for 2009/2010. To date, the organization has granted more than $1 million in research funding to investigate novel approaches to understand and treat PF. "The CPF is proud that our continued public support, and the matching grants from ATS are allowing us to move research forward," said Michon. The CPF has also provided more than $200,000 in combined research gifts to the University of California Los Angeles, University of Michigan and the University of Chicago since 2005.
"The CPF is the voice for tens of thousands of Americans who are suffering from PF and who can't easily speak for themselves. We are very excited to have made so much progress this last year. Our deepest hope is that we will see a breakthrough in treatment for our patients and we will continue to raise research funds until the day there is a cure," Michon said.
Highlighting the impact of the disease on people from all walks of life, in 2008 we saw the loss of Odetta, the civil rights legend and singer, as PF contributed to her death, and cartoonist Steve Gerber, creator of Howard the Duck. In death, they joined other such luminaries as Marlon Brando, Evel Knievel, Robert Goulet, former Treasury Secretary William Simon, and Peter Benchley, all of whom were victims of the dreaded disease.
The Coalition for Pulmonary Fibrosis works on a national scale to support research for a cure and to assist patients. For information or to support this important work, please contact the CPF at 1-888-222-8541, or visit www.coalitionforpf.org.
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
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 17,000 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