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Pulmonary Fibrosis to be featured on the TODAY Show

Unfortunately, I'm just now getting this press release and this aired this morning, but perhaps we can find it on YouTube or on NBC's Web site. As so many of us with Hermansky-Pudlak Syndrome have pulmonary fibrosis (myself included), we can't help but shout from the rooftops together, and be down right thrilled when one of the shouters gets a little press! It still amazes me that we have no treatment for pulmonary fibrosis, a problem that kills as many people a year as breast cancer, and yet gets a fraction of the attention or research dollars. (Not that I begrudge breast cancer anything - they've done an awesome job of promoting their disease.)


Pulmonary Fibrosis, CPF, to Receive National Media Attention on NBC'S TODAY Show Via California Man's Desperate Fight for Survival

Show to Air Tuesday, June 15th

SAN JOSE, Calif., June 14 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today one of the first major national media coverage opportunities for the CPF and Pulmonary Fibrosis (PF). NBC's TODAY Show will focus 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. The show will air tomorrow, June 15th, on NBC. Please check local listings for the time of the TODAY Show in your area.

O'Rourke is embarking on a national media campaign along with the CPF to bring attention to the disease during his desperate fight for survival. O'Rourke, who has been 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 are suffering from PF, an untreatable, terminal lung disease that causes irreversible scarring in the lungs.

"The determination and focus Bob has for this is utterly amazing," said Mishka Michon, Chief Executive Officer of the CPF. "He clearly is a man on a mission and is dedicated to making a difference in this disease as long as he possibly can."

As O'Rourke urgently talks with friends and contacts in the media business including NBC's Tom Brokaw, he is working to build a national awareness campaign that is the most important of his entire public relations career.

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 horribly diseased lungs give out. More than 40,000 people die from PF each year, the same number as succumb to breast cancer. 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 hope that by sharing my story, I can help change things in this horrible disease," O'Rourke said. "Recognition and awareness are key drivers in finding treatments and a cure for PF. It has worked well in breast cancer and AIDS and it can work here. We just have to keep fighting…and I'll fight as long as I have breath."

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

Comments

Patty Hunter said…
Heather, it has been 4 years since you have commented in my blog... the lyrics "When one is dying" was when I was told that I had Pulmonary Fibrosis... three years ago, my diagnosis was changed to C.O.P.D., instead. Chronic Obstructive Pulmonary Disease is what it is... and I was told that it was a gradual terminal disease... could be another 10 years or more or less than 10... depending on how it is progressing. I still live day by day and I am praying for you.. someday we will have cures for our diseases... God's blessings be with you, my friend... love from Patty Maggie Anne Hunter

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