CPF reports success in advocacy, research support and awareness of PF

Dec 30 2009

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.

Also in 2009, the CPF launched its first Public Service Announcement (PSA) to TV stations and via the Internet. The PSA, entitled "Target," portrays a need for increased public awareness of PF by noting the rapidly increasing prevalence of the disease and the need to accelerate efforts to help patients, and understand and treat PF. The video conveys the stealth nature of the fatal lung disease that targets its victims randomly.

"The CPF takes very seriously its role as both a friend and advocate for patients and families fighting this dreadful disease. We are here to help them in their time of great need and we're working on multiple fronts to make things better for future PF patients. Our deepest hope is that we will see a breakthrough in treatment for our patients and we will continue to raise research funds to find a cure," Michon said.

The CPF saw more national media attention go towards PF including an interview by Country Music Television (CMT) with actor James Marsden who lost his father-in-law to PF. Marsden, along with his wife, soap opera actress Lisa Linde, hosted a CPF fundraiser in 2009 paying tribute to Dennis Linde, a famous songwriter. His songs have been recorded by artists such as Elvis, the Dixie Chicks and Garth Brooks. In addition, the CPF was heard on Sirius satellite radio along with renowned PF expert, Maria Padilla, of Mt. Sinai Medical Center, and advocate Terence Hales. Former Utah Governor Olene Walker, a PF patient, appeared on ABC News to share her personal story of her illness with PF and express the critical need for more funding and research into the 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.