Coalition for Pulmonary Fibrosis Honors Individuals for Their Dedication
 

Culver City, Calif. – The Coalition for Pulmonary Fibrosis (CPF) has announced its annual awards honoring three critical areas of leadership that impact the work of the Pulmonary Fibrosis (PF) community.  The recipients, Bob and Sandy O’Rourke, Congressman Brian Baird, and Dr. Naftali Kaminski, are champions for the always-fatal disease by trying to create change, offering support, and giving hope.

“The Coalition is proud to honor individuals who have made a visible and important difference for this constituency.  They are not alone but unfortunately, we cannot honor all those to whom we owe a deep thanks for their work on behalf of our patients, and they are many,” says Mishka Michon, the CEO of the Coalition for Pulmonary Fibrosis.

Bob and Sandy O’Rourke of Pasadena, Ca., will receive the Francis Cabral Humanitarian Award. This award is granted to those patients or caregivers who significantly improve awareness of Idiopathic Pulmonary Fibrosis (IPF) in their community and nationwide, who selflessly further the mission of the CPF, and who shine as a beacon of hope and inspiration to all those suffering from this disease.

The O’Rourkes are honored for their outstanding efforts at bringing recognition of Pulmonary Fibrosis to households around the country.  Bob has toiled at fulfilling his promise:  “Before I take my last breath, I want to make PF a household word.  Recognition and awareness are key drivers in finding treatments and a cure.  It has worked well in breast cancer and AIDS and it can work here.  We just have to keep fighting.”  With a number of television, print and radio interviews, the O’Rourkes have increased awareness exponentially around the country.

Congressman Brian Baird (D-Wa) will receive the Charles G. Norwood Memorial Advocate of the Year Award which recognizes an individual’s outstanding commitment to improving awareness of IPF in his or her community and furthering the mission of the CPF. Baird introduced the first-ever bill establishing a Congressional research allocation for Pulmonary Fibrosis, the Pulmonary Fibrosis Research Enhancement Act (PFREA – H.R. 1079) making history in a way that may ultimately alter the future for all PF patients.

Having lost his father to the disease, he has a personal link to PF and says that like most others, he was shocked and confused to learn that his father was dying of a fatal disease that was unknown to him, as it is to most Americans.  When he realized that PF fatalities matched those of breast cancer, he was even more driven to work for increased research into the disease.  His House bill led to a Senate bill, S. 3703, that also requests the establishment of a registry so that answers can be found for this 100 percent fatal disease.  Although he is retiring at the end of the 111th Congress, Baird’s effort has brought 139 co-sponsors to the House bill and what he introduced has set in motion a continuing effort in the legislature to increase funding for PF.

“I am honored and humbled to receive this acknowledgement,” said Baird. “I am grateful that 147 of my House colleagues co-sponsored the Pulmonary Fibrosis Research Enhancement Act, and I am grateful to Senators Murray and Crapo for introducing a Senate companion bill. The search for a cure to this deadly disease is a very personal mission. It pains me that so few people know about pulmonary fibrosis, because it kills as many people annually as breast cancer does. Often when they do learn about PF, it’s too late.”

Dr. Naftali Kaminski, director of the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease and the Lung, Blood and Vascular Center for Genomic Medicine,  and Professor of Medicine, Pathology, Human Genetics and Computational Biology at the University of Pittsburg, will receive the Marvin I. Schwarz Research Award which recognizes a researcher’s commitment to improving the quality of life of those living with IPF through compassionate patient care, education, and support, while leading research efforts to find a cure.

Kaminski is an internationally recognized IPF expert. As a researcher he pioneered the application of genomic technologies in the study of interstitial lung disease. Among his major discoveries is the finding that a novel group of small molecules called microRNAs are important in IPF – a finding that is likely to lead to new drugs, as well as the identification of proteins in the lung and in the blood that can aid in diagnosing the disease earlier and more accurately.

As the director of the Simmons Center for Interstitial Lung Disease, Kaminski and his team worked with hundreds of patients suffering from PF, and focused on all aspects of disease, from better diagnosis, easier access to care and research, and improved quality of life.

“Finding answers to PF has been a huge challenge, however the research we have been doing of late has led to important breakthroughs in the understanding of lung fibrosis.  For the sake of our patients, I think that we should now focus on bringing the fruits of these breakthroughs to the clinical arena and to the bedside.  If we focus on doing that – we will have effective therapies that will improve the outcome and quality of life of patients with pulmonary fibrosis much sooner than everybody is expecting,” said Kaminski.

About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis 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. There is currently no known cause or cure. Approximately one percent of patients’ lives are extended through lung transplants. 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 visit www.coalitionforpf.org or call (888) 222-8541.