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Last updated on April 17, 2014 at 21:23 EDT

First National Media Coverage On Pulmonary Fibrosis Drive New Awareness, Provide Hope to Dying Patients,

June 17, 2010

SAN JOSE, Calif., June 17 /PRNewswire-USNewswire/ — The Coalition for Pulmonary Fibrosis (CPF) said today stories appearing this week on The TODAY Show and CBS News’ website, www.cbs.com, provided the first national major media coverage of pulmonary fibrosis (PF) in history. That coverage, viewed by more than five million people, is helping to drive a new level of awareness for this little known disease and is providing hope for thousands suffering from the disease.

Both the NBC’s TODAY Show story and the CBS.com story focused on the disease in an interview with California patient Bob O’Rourke, who suffers from the disease and will die from it unless he receives a lung transplant in time. He is partnering with the CPF to build an expanded national awareness campaign. O’Rourke is devoting his time to this national media campaign, despite his desperate fight for survival, because of his concern about how few Americans are aware that there is an untreatable lethal disease taking 40,000 lives a year.

O’Rourke, who was the vice president of public relations for California Institute of Technology for more than 20 years, is accustomed to being behind the scenes helping promote other people’s stories. Now, he is stepping out in front as one patient among thousands who suffers from PF, a terminal lung disease that causes irreversible scarring in the lungs.

“Bob provides a human face and a real life drama for viewers and readers,” said Mishka Michon, Chief Executive Officer of the CPF. “He is sharing his story in the hopes that he can change things for future and help drive awareness and increased funding for the disease that is threatening to take his life.”

O’Rourke was listed for a lung transplant at UCLA on June 10. It’s a run against the clock as his chances of survival are completely dependent upon finding a lung match for him before his severely diseased lungs give out. PF matches breast cancer in lives lost each year – a startling 40,000. The disease is 100 percent fatal unless a patient can receive a lung transplant, but few do in the overall scheme of things – less than one percent. The average life expectancy with the disease is less than three years.

Thus far in O’Rourke’s personal endeavor to drive awareness and attention to PF, he has appeared in media coverage on KNBC TV and Southern California Public Radio. O’Rourke was also featured in three articles in the Pasadena Star-News, including an editorial by Public Editorial staffer Larry Wilson about the commitment of O’Rourke and his friends to build awareness around PF. He is hopeful the coverage will help the campaign pick up even more steam across the country.

“I am thankful for the national coverage we have garnered so far and I won’t quit until the message is everywhere,” O’Rourke said. “As long as I have breath in my body, I’ll fight this fight.”

To view the archives of the stories from The TODAY Show and CBS.com, click on these links, respectively:

The TODAY Show: http://tiny.cc/d97h2

CBS.com: http://www.cbsnews.com/stories/2010/06/15/health/main6585060.shtml

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 23,000 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


Source: newswire