Survivors, Advocates Ask Congress For Help For Lethal Lung Disease

Advocacy in September for National Pulmonary Fibrosis Awareness Month

CULVER CITY, Calif., Sept. 20, 2012 /PRNewswire-USNewswire/ -- Few people live to tell their stories as survivors of the lethal lung disease, Pulmonary Fibrosis (PF). Two women, still alive because each received a lung transplant, joined the Coalition for Pulmonary Fibrosis (CPF) and its other advocates from across the country to meet with 48 Members of Congress in an effort to help the 130,000 other people who are dying from the disease.

The CPF's Capitol Hill meetings are part of National Pulmonary Fibrosis Awareness Month, an effort to draw attention to the lung disease that claims as many lives each year as breast cancer – 40,000.

Heather Snyder, 40, of Harrisburg, Penn., and Sarah Ridder, 39, of Sauk Village, Ill., are part of the approximate one percent of PF patients who receive a lung transplant for the disease which has no FDA approved treatment and no cure. Unfortunately, the average post-transplant survival for PF patients is just six years. But that isn't stopping Snyder or Ridder who both say they believe they have been given second chances for a reason – and that is why they are on a mission to help the CPF raise awareness of PF on and off Capitol Hill.

As part of the CPF's 20-member volunteer team for September awareness month, the two joined two days of meetings on September 11th and 12th with members of Congress and staff members – the majority of whom serve on key committees for the CPF's effort, including the Energy & Commerce committee in the House and the Health, Energy, Labor & Pensions committee in the Senate. 

The advocacy group's primary goal was to convince Members of Congress to co-sponsor the Pulmonary Fibrosis Research Enhancement Act . If passed, the bill will help find treatments for the disease through a surveillance program that will track exposures, genetic information and geographic data and establish an alliance of agencies to develop best research strategies as well as raise awareness of Pulmonary Fibrosis issues in communities nationwide.

Armed with stories written about their personal experiences with PF, Snyder and Ridder walked the halls of Congress along with other volunteers who have lost a mother, father, wife, husband, brother or sister to the disease or who have a family member currently suffering. The CPF's research partner, the American Thoracic Society, also joined the efforts to support the patients and attend meetings with Congress.

"We are inspired by the strength and courage of our patients and family members," said Mishka Michon, chief executive officer of the CPF. "These volunteers can bear witness to the pain caused by this terrible disease and they help drive home how desperately we need to find treatments and a cure."

Most patients lose their ability to breathe in just under three years, as the disease renders their lungs unable to process oxygen. They essentially suffocate, which is a devastating slow process for the patient and phenomenally painful for caregivers to witness.   

"It was so hard to be a young child and see my father gasping for air," said Ridder. "When I started having breathing difficulties myself, the oh-so-familiar fear came back." 

Both Snyder and Ridder lost their fathers to the disease at the same time in their lives – they were each just nine-years-old.  Since that time, Ridder has lost two sisters and two brothers to the disease and her younger brother is also a lung transplant recipient. Experts estimate as many as 15 percent of PF cases are genetic in origin.

The vast majority of the remaining 85 percent of cases are sporadic, or random – there is no understanding of their causes. More than a third of patients suffering from the disease that creates relentless and progressive scarring in the lungs, have never smoked.

The two women have also been huge supporters of the CPF's petition to patients, families and friends asking them to sign a letter demonstrating nationwide support of the bipartisan bill from voting constituents.  It's a petition that has been signed by more than 5,000 people in just three weeks. To sign on to the petition, please click on the link here, and to learn about the CPF's PF Month activities, visit: http://www.coalitionforpf.org/cpf_advocacy_sept2012.php

This year marks the CPF's tenth visit to Capitol Hill, and an alliance with Congressmen Erik Paulsen (R-MN) and Congresswoman Tammy Baldwin (D-WI) as well as Senator Chris Coons (D-DE) and Senator Mark Kirk (R-IL), who reintroduced the bill in the current Congress.

PF patients, families and those affected by PF can help with 2012 awareness efforts and help gain passage of the PF bill by joining the CPF's advocacy campaign, Campaign ACT. For further information, visit the CPF at www.coalitionforpf.org, call 888-222-8541, or email info@coalitionforpf.org

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's Campaign ACT
Since 2002, the CPF has been leading a national advocacy effort directed toward Congress, the National Institutes of Health and the Centers for Disease Control to increase research funding for PF and accelerate efforts to find a cure for this devastating lung disorder.  The CPF has also actively advocated for passage of legislation important to the PF community in the areas of Medicare and Social Security coverage.

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 26,000 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 (CPF)



RELATED LINKS
http://www.coalitionforpf.org

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