Awareness Week is September 7-13
SAN JOSE, Calif., Sept. 4 /PRNewswire-USNewswire/ -- Olene Walker is no stranger to Capitol Hill. The former governor of Utah (2003-2005), suffers from an untreatable and terminal lung disease called idiopathic pulmonary fibrosis (IPF), also known as pulmonary fibrosis (PF). She will meet with Members of Congress, many of whom she knows from her recent years as governor, to garner support for a historic bill, the Pulmonary Fibrosis Research Enhancement Act (H.R. 6567).
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Walker joins the Coalition for Pulmonary Fibrosis (CPF) on Capitol Hill with patients and family members for the sixth annual National IPF Awareness Week, which includes a patient meeting with the National Institutes of Health and meetings with Members of Congress.
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H.R. 6567 will provide much needed help for more than 128,000 patients and Walker will speak for herself and thousands of other dying patients across the country about the disease that claims as many lives each year as breast cancer. Currently, PF receives less funding than diseases that claim far fewer lives annually, which seriously impacts the potential for discovery of causes or treatments.
"I am fighting for my life and the lives of so many others who are suffering from this horrible disease," said Olene Walker. "I am lucky to still be here and to be able to be a voice for so many who are struggling to breathe and can't be here to speak for themselves."
Patients and family members will be on the Hill next week to meet with Members of Congress and their staffs about the urgent need for increased awareness and funding for the deadly disease that has no FDA approved treatment, no known cause and no cure. The disease claims 40,000 lives a year.
Specifically, PF advocates will join Walker in seeking support of Congress for the recently introduced bill.
"Our efforts for this sixth annual IPF Awareness Week are extremely focused this year. We will be asking Members of Congress to support this important IPF legislation that will help to lead to lifesaving treatments. IPF Week efforts will help to increase awareness of this lethal disease that we are working hard to take from terminal to treatable," said Mishka Michon, chief executive officer of the CPF.
Patients and family members nationwide are encouraged to reach out to their Members of Congress to support H.R. 6567 and efforts related to IPF Awareness Week.
Disparity of Federal Funding
The disparity of federal funds put towards research in pulmonary fibrosis is profound. This year, less than $18 million will be spent on a disease that affects 128,000 people compared with hundreds of millions spent on diseases that affect a small fraction of that number of patients.
Background on IPF
About Idiopathic Pulmonary Fibrosis (IPF)
IPF 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 128,000 Americans suffer from IPF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. IPF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.
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
