Pulmonary Fibrosis Patient, CPF Member & Advocate, on 'The View'

Pulmonary Fibrosis Patient, CPF Member & Advocate, on 'The View'

9/11 Responder Vito Valenti Talks About IPF, Need for Lung Transplant

SAN JOSE, Calif., April 27 /PRNewswire/ -- Today, Vito Valenti spoke to "The View" hosts Rosie O'Donnell and Joy Behar about his personal struggle to survive idiopathic pulmonary fibrosis (IPF). Like thousands of people who suffer from IPF, his only hope is with a lung transplant. There is currently no FDA approved treatment and no cure for the deadly lung disease.

Any awareness that is created for IPF by his interview is a huge step for the IPF community, says Valenti. "The public knows well what a 9/11 hero is, but it is still the case that few know that there are 9/11 heroes are dying from an untreatable illness which no one yet understands," he said. "Most people have never even heard about pulmonary fibrosis. I want to raise awareness of this illness that affects so many, including some 9/11 responders like me, and the critical need for increased research funding to find lifesaving treatments."

Scar Tissue Consumes Patients' Lungs

Very few Americans have heard of pulmonary fibrosis, but the deadly lung disease, characterized by progressive and massive scarring in the lungs, affects several times more people than cystic fibrosis and Lou Gehrig's Disease, yet receives a small fraction of the federal research funding. Pulmonary fibrosis affects 128,000 people in the U.S. The numbers are sobering -- 40,000 deaths a year, which is comparable to breast cancer.

Event on May 12 Opportunity for Patients to Hear from World Class Doctors About Disease

Mount Sinai and the CPF are hosting an educational patient seminar in New York City on Saturday, May 12 from 11:30 a.m. - 5:30 p.m. The "Living with IPF" event is open to patients and families who are fighting IPF as well as members of the media.

Goldwurm Auditorium
Mount Sinai School of Medicine
Mount Sinai Medical Center
Madison Avenue
New York, NY 10029

For more information on the event, please contact the CPF at 888-222-8541 or visit the CPF website at http://www.coalitionforpf.org/.

Transplant Currently Only Life-Saving "Treatment"

Lung transplant is currently the only treatment option for pulmonary fibrosis proven to prolong life, yet most don't live long enough to get one.

Most people who have IPF live only 3-5 years. Although there are clinical trials underway investigating novel treatments for the disease, there remains no effective treatment to extend life.

Key Facts About Idiopathic Pulmonary Fibrosis (IPF):

Definition: Idiopathic Pulmonary Fibrosis (IPF) is defined as a progressive and ultimately fatal scarring process in the lungs of unknown cause. The terms IPF and pulmonary fibrosis are used interchangeably when describing this disease.

-- This year, 40,000 people will die from IPF, the same number that will be claimed by breast cancer

-- Several 9/11 responders and workers have died from pulmonary fibrosis, according to published news reports. It is too early to tell if there is a link between possible exposures at the Ground Zero site and the incidence of IPF, though research is underway to that effect. Physicians like Maria Padilla, MD, are members of a team of experts at the Mount Sinai Medical Center and a consortium of other institutions, who are investigating the connections between exposures at the Ground Zero site and the incidence of pulmonary diseases, including IPF

-- The Federal government's role is critical to accelerate efforts to help researchers identify new approaches to treat and cure IPF

-- There remains a huge gap in need for research and funding for IPF. While IPF is five times more common than Cystic Fibrosis (CF), for comparison purposes, CF receives about $140 Million in federal funds each year while PF receives less than $14 Million

-- Fewer than 30% of Americans have heard of Pulmonary Fibrosis (IPF), but the progressive and ultimately terminal lung disease affects 128,000 Americans

-- The median survival rate for IPF patients is just three years. About 48,000 people will be diagnosed this year

-- IPF Prevalence is increasing - 156% in the past five years. The need has never been greater for increased awareness, education, advocacy and research

-- Everyone is at risk for this deadly disease

-- There is no known cause, no FDA approved treatments and no cure for IPF. Research is critical to find ways to combat this deadly disease

-- Although there are clinical trials underway investigating novel treatments for the disease, there remains no effective treatment to extend life; even though there are several clinical trials, no therapy is considered a cure. New funding is needed from the government into pathogenesis and epidemiology of the disease; until researchers understand how the disease is caused, and how it progresses, a cure will not be found; the government, and the NIH in particular, play a crucial role in funding this type of research

-- The CPF partners with major medical associations such as the American Thoracic Society and world-class medical centers to fund critical research into IPF

About the Coalition for Pulmonary Fibrosis

The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF), 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 pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of IPF issues; and works to improve awareness of IPF 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 11,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with pulmonary fibrosis. For more information please visit http://www.coalitionforpf.org/ or call (888) 222-8541.

Source: Coalition for Pulmonary Fibrosis

CONTACT: Teresa Geiger, Coalition for Pulmonary Fibrosis,
+1-303-521-4080 cell, or 888-222-8541, ext. 702, or
tgeiger@coalitionforpf.org

Web site:

http://www.coalitionforpf.org/

NOTE TO EDITORS: The CPF is available to provide interviews for reporters with its CEO, medical experts, as well as other IPF patients.

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