Harrisburg Event Marks National IPF Awareness Week, Honors Founder of State Registry
PITTSBURGH, Sept. 22, 2011 – Experts from Pennsylvania medical centers, including the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Diseases at the University of Pittsburgh School of Medicine and UPMC, will join patients and families in Harrisburg on Sept. 27 to raise awareness of and share knowledge about idiopathic pulmonary fibrosis (IPF), a progressive and typically fatal disease of lung scarring.
This year’s e event, which marks National IPF Awareness Week, will include a special ceremony to honor Daniel Beren, whose wife Joan was a Simmons Center patient and the inspiration behind his effort to establish what is now called the Pennsylvania Idiopathic Pulmonary Fibrosis State Registry (PA-IPF). A collaboration of five medical centers, the registry, which will be renamed for the Berens, aims to improve awareness, access to care and research for IPF patients. The registry was initiated three years ago as a result of Mr. Beren’s efforts and was recently awarded with a $425,000 grant from Pennsylvania’s Department of Health and Human Services.
“Mr. Beren’s initiative created a unique consortium of the major medical institutions in the state to collaborate and enhance our ability to find new treatments for IPF,” noted Simmons Center medical director Kevin F. Gibson, M.D. “It is already changing the access of patients with IPF to expert care and, in the near future, it will transform the way we think of IPF.”
Nearly 675 IPF patients have joined the registry so far, but an estimated 5,000 to 7,000 people in Pennsylvania have IPF. Approximately 1,000 die every year.
“In the last few years we have made significant progress in our understanding of IPF. We and other groups have identified genes that explain the disease, and discovered new drug targets and markers that predict progression. The IPF state registry will allow us to validate our discoveries on larger populations and make the results more accessible to patients and their families,” said Naftali Kaminski, M.D., Simmons Center director and professor of Medicine, Pitt School of Medicine.
“The experience that I had with my wife’s disease convinced me that we had to improve the awareness and understanding of IPF,” said Mr. Beren. “I hope that our efforts will improve the chances for cure of this devastating disease.”
The Harrisburg event will include educational sessions for people living with IPF, as well as an advocacy component to give patients and families an opportunity to inform state officials about the need for greater research funding.
Drs. Kaminski and Gibson and experts from Temple University, Geisinger Health System, the University of Pennsylvania, Penn State Milton S. Hershey Medical Center, as well as patient representatives and leaders of the Coalition for Pulmonary Fibrosis and the Pulmonary Fibrosis Foundation, will conduct a seminar from 11 a.m. to 4 p.m., Tuesday, Sept. 27, at the Harrisburg Hilton Hotel, One North Second Street. It includes a question-and-answer period with researchers and light refreshments. Oxygen will be available. To register or to learn more about the event, call 1-866-922-4IPF (4473).