2014

Late Patient's Husband, Fellow Advocates Ask Congress for Help for Lethal Lung Disease

Ninth Annual National Pulmonary Fibrosis Awareness Week Sept. 18-24

CULVER CITY, Calif., Sept. 19, 2011 /PRNewswire-USNewswire/ -- Doris Lowenthal planned to be on Capitol Hill this week. As a member of the Coalition for Pulmonary Fibrosis' (CPF) Pulmonary Fibrosis (PF) Awareness Week volunteer team, she was scheduled for more than 60 meetings with members of Congress and staff members.  She prepared just what she wanted to say to them to gain their compassion and their co-sponsorship of a bill that had the potential to save her life and those of thousands of others.  Doris died just weeks ago before she could deliver the message herself.  Instead, her husband, Barry, and her fellow Pulmonary Fibrosis (PF) advocates will share her story along with their own as they canvas Capitol Hill this week during the ninth annual National Pulmonary Fibrosis Awareness Week through the 24th.  

Doris was a two-time breast cancer survivor, but nothing could stop the lethal disease that ravaged and destroyed her once healthy lungs.  She received a single lung transplant several years ago in hopes that she'd live a somewhat normal life and could remain active in the fight to find treatments and a cure for the disease that claims as many lives each year, ironically, as breast cancer (40,000) and affects a known 128,000 Americans.  Weeks ago, Doris, a Mary Kay independent consultant, was flying from her home in Maryland to Dallas, Texas, when she became so ill that the pilots were forced to make an emergency landing in Memphis, Tennessee.  

The ensuing weeks were difficult on Doris, but she remained upbeat and positive, and assured her friends and family that she'd be out of the ICU and on Capitol Hill again this year.  She lost her fight on August 14 to the disease that has no FDA approved treatment and no cure.  

"I am here this week for Doris," said Barry Lowenthal.  "She was so passionate about finding a treatment and a cure for PF so that others wouldn't have to go through what she did.  I will do everything I can to continue this fight for her and each step I take, she'll be with me."

The primary goals of this year's activity are to ensure passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA, H.R. 2505, S. 1350) in the Senate and the House, and to raise awareness of Pulmonary Fibrosis issues in communities nationwide.

This year marks the CPF's ninth visit to Capitol Hill, and a new alliance with Congressman Erik Paulsen (R-MN) and Congresswoman Tammy Baldwin (D-WI), as well as Senator Chris Coons (D-DE) and Senator Mark Kirk (R-IL) to reintroduce the PFREA  in the 112th Congress.   This historic, bi-partisan legislation would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.  The Pulmonary Fibrosis Foundation (PFF), in demonstration of its support for the PFREA, will be joining the CPF for the Hill meetings.

"We are inspired by the strength and courage of our patients and family members," said Mishka Michon, chief executive officer of the CPF.   "Having the voice of the patient community heard loud and clear will make things happen to bring attention and awareness to PF in Washington and beyond."

"The PFF joins in thanking the volunteers who travel to Capitol Hill each year to request the support of our legislators as we seek to find answers to PF.  It is our hope that this effort will help us move closer to answers to this disease," said Patti Tuomey, chief operating officer for the PFF.

The progression from a bill of recognition of the disease, H. Con Res 182, which was passed in 2007, to a bill establishing funding for PF research, is indicative of increased responsiveness on the part of Congress. Over the past nine years, the CPF and its advocates have met with hundreds of Members of Congress.

PF patients, families and those affected by PF can help with 2011 awareness efforts and help gain passage of the PFREA 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 24,000 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.

About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community both locally and in Washington D.C., promote disease awareness, and provide a compassionate environment for patients and their families. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. From December 1-3, 2011, the PFF will host its first international scientific conference, IPF Summit 2011: From Bench to Bedside, in Chicago. With more than 60,000 constituents worldwide the Pulmonary Fibrosis Foundation is the international resource for the pulmonary fibrosis community. For more information visit www.pulmonaryfibrosis.org or call 888-733-6741.

SOURCE Coalition for Pulmonary Fibrosis



RELATED LINKS
http://www.coalitionforpf.org

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