The Coalition for Pulmonary Fibrosis (CPF) calls 2009 a year of success in advocacy, research support and awareness, even in a year plagued by the economic recession. PF is a fatal disease that has no known cause, no FDA-approved treatment, and no cure.
The CPF increased grassroots fundraising efforts in 2009, further advancing the effort to build awareness of the disease throughout the country. The organization and its members held more fundraising events than in any year in its eight-year history and celebrated a 20 percent increase in events over 2008. The CPF saw a three-fold increase in the numbers of virtual fundraisers through its web-based fundraising pages that allow members to create a page describing their PF story or paying tribute to someone with the disease.
"In a strained year in which many well-established health organizations reported losses of up to 50 percent in income while other organizations were forced to close, the CPF's 2009 record indicates the relative health of the foundation in this very difficult year," said Mishka Michon, Chief Executive Officer of the CPF.
The CPF continued its commitment to fund research through a $200,000 partnership grant with the American Thoracic Society (ATS). The CPF/ATS partnership enables the search for treatments to assist patients who are suffering from PF, a relentless and ultimately fatal lung disease. As many as 40,000 patients die each year to PF - the same number as are lost to breast cancer.
A landmark bill, The Pulmonary Fibrosis Research Enhancement Act (H.R. 1079), which developed out of a CPF partnership with Rep. Brian Baird (D.WA) and Rep. Mike Castle (R-DE), was re-introduced on February 13, 2009 in the U.S. House of Representatives. This bill represents 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. Through its advocacy work representing the efforts of hundreds of PF patients and families, the CPF and it members worked to gain 69 members of Congress as co-sponsors of the legislation this year.
The CPF was recognized for its annual advocacy effort, National Pulmonary Fibrosis Awareness Week, when it was named as a finalist for a national advocacy award by PR News. The CPF was in the company of organizations with substantially more resources, including the American Heart Association and Farm Aid.