Former Spokesman for Caltech Lends Voice to Disease That Took Him to Brink of Death

CULVER CITY, Calif., Feb. 24, 2011 /PRNewswire/ -- Bob O'Rourke is used to being a spokesperson.  He lent his voice and words to California Institute of Technology (Caltech) for more than 20 years as vice president of public relations.  For nearly a year now, O'Rourke has spoken out nationally about the disease that wreaked havoc on his lungs and left his life in the balance.  

Suffering from Pulmonary Fibrosis (PF), O'Rourke has worked with the Coalition for Pulmonary Fibrosis (CPF), a patient support organization that also funds research to find a cure to the otherwise deadly lung disease, to raise awareness and funding.  The only way to survive the disease which claims most of its victims in less than three years is with a lung transplant.

O'Rourke was listed for transplant in June 2010 and began what would be a relatively lengthy wait for new lungs – lungs O'Rourke feared wouldn't come in time.

But they did.  On Friday, February 18th, he got the call that would change his destiny with the disease that claims 40,000 people a year, the same number as lost to breast cancer.  He was transplanted at UCLA and is currently in ICU on his way to recovery.

"Bob O'Rourke is championing the cause of PF in a way that no one else has.  He has put his heart and soul into it along with his professional expertise in working with a good story and he worked the angles and connections to get his story covered," said Mishka Michon, CEO of the CPF.  

He shared his story with his friends and colleagues – people he'd been pitching stories about other people to for years.  They took notice and the resulting major media coverage helped increase national awareness efforts of the disease in 2010.  

"The stories told about Bob provided the first national major media coverage of pulmonary fibrosis in history," said Michon.  "That coverage is helping to drive a new level of awareness for this little known disease and is providing hope for thousands suffering from the disease." 

His story aired on major national media including NBC's The Today Show, CNN and NBC Nightly News and brought the message to more than five million viewers.  Radio stories such as one aired by NPR reached hundreds of thousands more and web audiences and social media further disseminated the message of the disease throughout the country.

Now, the news is spreading about Bob's transplant.  Bob even made the "pitch" to his media friends when he called to tell them he was headed to the hospital to get his new lungs.   His friends are taking this ride with him and making sure the story of this next stage of his experience is spread as widely as possible – a story they hope has a happy ending.

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©(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 United States. With more than 23,000 members nationwide, the CPF is the largest nonprofit organization in the country 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

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