Each year around the world, as many as 48,000 people are diagnosed with pulmonary fibrosis and 40,000 people die – the same number of people who are lost to breast cancer annually.
Pulmonary fibrosis is a devastating disease that robs people of their ability to breathe. To help raise awareness about this unknown deadly disease, the Coalition for Pulmonary Fibrosis (CPF) is kicking off “Pulmonary Fibrosis Awareness Month” this September.
Actress Rose McGowan, Honorary Chair of the Daughters of PF program, which calls on women to fundraise and generate awareness of PF, joins in the CPF’s call for increased investment in research to find a cure.
McGowan lost her father to PF. “When I learned PF is 100 percent fatal and that my father was going to die, I was utterly hopeless and broken-hearted,” said McGowan, best known for her role on TV’s long-running show ‘Charmed.’ “I can’t begin to describe how PF wreaks destruction on the patient and their loved ones. Many illnesses, including breast cancer, are better known than PF, but PF is claiming just as many lives as these illnesses. Even worse, the investment in research for PF is minimal. It’s time for a change.”
“We are proud to stand with Rose and the patients and their families to kick off this month to draw attention to this horrible disease. We have expanded our reach to communities and cities nationwide for a truly grassroots effort driven by those who desperately need help,” said CPF Chief Executive Officer Mishka Michon. “We cannot stand by as upwards of 128,000 people suffer every year, with no cure on the horizon and are deeply grateful for those who step forward to help in this campaign,” added Michon.
“The search for an effective treatment for pulmonary fibrosis remains a challenge to the academic scientific community. New and expected discoveries will hopefully lead to individualized therapies,” said Marvin Schwarz, MD, James C. Campbell Professor of Pulmonary Medicine at the Division of Pulmonary Sciences and Critical Care Medicine at the University of Colorado in Denver. “All of us in the pulmonary community welcome the call for increased research funding and we know that the answers are closer each day,” he added.
National PF Awareness Month includes fundraising and awareness-building efforts around the country organized by patients, families and partners, as well as a week on Capitol Hill during which advocates will meet with Members of Congress and their staffs. It also includes an online petition which has been signed by patients and families nationwide and will be delivered to Congress. More than 5,000 people have signed the petition since its launch just three weeks ago. To sign the petition, click here.
The CPF will be on Capitol Hill on September 11 and 12 and will be joined by patients and advocates including two patients who have received lung transplants – one just three months ago and the other more than a year ago. Their meetings will focus on the dire need for increased Congressional attention to the disease via support of the Pulmonary Fibrosis Research Enhancement Act (H.R. 2505, S. 1350) a bill that currently has 73 co-sponsors in the U.S. House of Representatives and 13 in the U.S. Senate.
A keynote of PF Awareness Month is “PF Week at the American Thoracic Society” (ATS), a partner of the CPF, which will be held September 23-29. The CPF will join the ATS to hold a free webinar on September 28 with guest hosts Dr. James Kiley, Director of the Lung Division of the National Heart, Blood, Lung Institute at the National Institutes of Health and Gregory Cosgrove, MD, a pulmonologist and PF researcher at National Jewish Health in Denver, CO. PF for patients, families and caregivers as well as professionals and will provide content for a webpage on the ATS website on the subject. To learn more, visit the CPF website at www.coalitionforpf.org or visit the ATS’ site at www.thoracic.org.
Source: PR Newswire
