DAUGHTERS GOING PURPLE FOR PULMONARY FIBROSIS

Women Who Witnessed a Parent, Other Family Member Suffer Speak Out Against Deadly Lung Disease

        Print
| Source: Coalition for Pulmonary Fibrosis (CPF)
photo-release

ATLANTA, Aug. 26, 2014 (GLOBE NEWSWIRE) -- The Daughters of PF, an advocacy group associated with the Coalition for Pulmonary Fibrosis (CPF), recently gathered in the Atlanta area to kick-start their national campaign to generate awareness of Pulmonary Fibrosis (PF) during National Pulmonary Fibrosis Month coming up in September. The deadly disease that claims 40,000 lives each year in the United States, the same as breast cancer. There is no treatment and no cure for PF and Idiopathic PF (of unknown cause), and patients generally die within three to five years of diagnosis.

The group gathered in Roswell, GA Sunday dressed in purple, the color of the CPF's logo. The CPF is asking advocates worldwide to use social media and show solidarity with the group's cause by posting photos of themselves and their loved ones wearing purple, and share their images using the hashtag #PurpleForPF.

In further efforts to raise awareness, several local governments around the country have recognized September as Pulmonary Fibrosis Month. Among these is Roswell, home to Daughters leader Lesley Steinberg, who for the second straight year secured a proclamation from Mayor Jere Wood. Steinberg's mother Charlotte Griggs, a Roswell resident and Georgia native, lost her battle to PF in September of 2011 at the age of 65. Griggs was active in the North Fulton Master Gardeners, and worked tirelessly with the group to beautify and maintain the historic landmarks in Roswell.

"I am honored to work with so many amazing women who have turned grief and pain into action and are coming together to bring attention to this devastating disease that has taken so much from us," said Steinberg.

In addition to encouraging members and advocates to participate in the social media campaign, and securing proclamations, several of the group's members will travel to Washington, DC later in September to meet with members of Congress, the National Institutes of Health (NIH) and the U.S. Food and Drug Administration (FDA). The unprecedented meeting at FDA for an FDA IPF Workshop will give PF patients and advocates the opportunity to speak directly to FDA about the devastating effects of the disease.

Background on National Pulmonary Fibrosis Awareness Month

September promises to increase the attention to PF as the CPF holds national awareness efforts for the 12th year as part of National Pulmonary Fibrosis Awareness Month in September. The CPF and the American Thoracic Society (ATS) will co-host an awareness week for the disease during PF month which includes a patient education day at Johns Hopkins Medical Center, the same week as the FDA workshop (September 21-27) and the CPF will bring patients and advocates to Capitol Hill in September, as well.

FDA Decisions Expected on First Two PF Drugs to Be Reviewed

The patient community is eagerly awaiting the FDA's decision on two potential therapies for Idiopathic Pulmonary Fibrosis (IPF), a form of Pulmonary Fibrosis with no known cause. If approved, InterMune's pirfenidone and Boehringer Ingelheim's nintedanib will be the first in IPF.

Report to the FDA

The CPF is currently gathering patient experiences via a software platform survey system with the Genetic Alliance called PEER. The program allows the CPF to query its patients, their family members and caregivers as well as the families of deceased patients, about what they have gone through with the disease. The CPF will analyze the data and present it to the FDA in a report in time for the FDA IPF Workshop. The survey can be found on the CPF's website at: http://www.coalitionforpf.org/peer-portal/

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 200,000 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 501C(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 28,000 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.

Attached photo is of women who are part of our Georgia Daughters of PF group. (L to R): Yvette Hendricks, Cathy Hendricks, Cicely Hendricks, Caroline Steinberg, Deven Eberhart, Lisa Waller, Sarah Haislip, Bottom (L to R): Seven Hendricks, Lesley Steinberg, Chloe Eberhardt, Kimberly O'Connor, Kiley O'Connor, and Kelsey O'Connor

A photo accompanying this release is available at http://www.globenewswire.com/newsroom/prs/?pkgid=27322
 

Teresa Barnes
Coalition for Pulmonary Fibrosis
303-521-4080