Jul 23, 2014, 13:35 PM

Media Contact:
Michelle Michael
VP, Marketing & Communications



Patients, caregivers and health care professionals share stories; offer awareness, hope and inspiration

CHICAGO, July 23, 2014/PR Newswire/--Twenty of the Pulmonary Fibrosis Foundation’s advocates have come together to inaugurate the PFF Ambassador program, a group of idiopathic pulmonary fibrosis (IPF) patients and caregivers who are committed to share personal stories of living with IPF as well as health care providers who deliver current disease education information to audiences across the country. While launching today, PFF Ambassadors have already begun making an impact during speaking engagements, including last month during a Team PFF event in New Jersey and an educational event in South Carolina last Friday.

“The purpose of the PFF Ambassador program is to engage with the larger community and cover all aspects of disease education. PFF Ambassadors will share their journey in order to inform and enhance disease awareness with the general public,” said PFF President and Chief Operating Officer Patti Tuomey, EdD. “Ten of our PFF Ambassadors are patients and caregivers who share their stories about living with the disease and ten are health care professionals who provide disease information.”

PFF Ambassador Kathy Biggs was a caregiver to her mother-in-law, Nini, who was diagnosed with IPF in 2007 and passed away in 2009. Biggs’ words of encouragement, including the importance of learning as much as she could regarding IPF, resonated with a group of PF patients, caregivers and healthcare providers during the Medical University of South Carolina’s “IPF Education Day” last Friday.

“It meant so much to me to hear Kathy share the story about her mother-in-law’s struggle with IPF,” said Carrie Elliott from Garden City, South Carolina. “My mother had IPF and so much of what Kathy shared was familiar to my own journey with my mother. She just thought that her age and weight had made her out of breath.”  

Biggs spent an extraordinary amount of time quickly learning about IPF while caring for Nini. “That’s why I’m so thankful the PFF is here so that everyone affected by IPF doesn’t have to figure this out on their own,” Biggs said.

In addition to working directly with the PF community, providing disease education to the general public is also essential, according to PFF Chief Executive Officer Daniel M. Rose, MD.

“Often people don’t know the symptoms of PF or understand how to explore treatment options,” Rose said. “One of the pillars of the PFF’s mission is to provide disease education. The PFF is grateful for its strong, national network of health care professionals, support group leaders and countless other advocates who help bridge that gap of understanding. We now add PFF Ambassadors to this exceptional group.” Rose further commented, “We hope to expand the number of PFF Ambassadors as the program grows.”

Upcoming PFF Ambassador speaking engagements include today’s PFF Disease Education Awareness Webinar, “Tools for Living Better with PF: Pulmonary Rehabilitation and Support Groups.” PFF Ambassadors participating in the program include lung transplant recipient Doug Jones and health care provider Chris Schumann, MS, RCEP, CES, program manager for cardiopulmonary rehabilitation, University of Alabama at Birmingham. On August 23, PFF Ambassadors Cathy Brown, RN, IPF patient Jeffery Peters and caregiver Michele Peters will speak at the Elmhurst, Illinois PF support group meeting.

The PFF Disease Education Webinar Series and the PFF Ambassador program have been made possible through the generous support of InterMune, Inc. To learn more about the webinar series, view archived webinars and register for future webinars, visit www.pulmonaryfibrosis.org/life-with-pf/pff-educational-resources/webinars.

Call the PFF Patient Communication Center at 844.TalkPFF (844.825.5733) toll free, or email pcc@pulmonaryfibrosis.org to request a PFF Ambassador. PFF Ambassadors are available to speak at PFF Care Center Events, PF support groups, fundraising events and other disease awareness programs.
To learn more about the PFF Ambassador Program, visit www.pulmonaryfibrosis.org/our-role/signature-programs/pulmonary-fibrosis-foundation-ambassador-program

About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to serve as the trusted resource for the pulmonary fibrosis (PF) community by raising awareness, providing disease education, and funding research. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. PFF Summit 2015: From Bench to Bedside, the PFF’s third biennial international health care conference, will be held November 12-14, 2015 in Washington, DC. For more information visit www.pulmonaryfibrosis.org or call 888.733.6741 or +1 312.587.9272 from outside of the US.

About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which over a period of time the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t receive the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is not a known cause. When there is no known etiology for the fibrosis (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis or IPF. IPF affects between 132,000-200,000 people in the United States (US), and between 37,000-40,000 people in the European Union (EU). The annual mortality is estimated to be 40,000 in the US, with an average survival of 2–3 years following diagnosis. There is no cure for IPF. There is presently no FDA-approved treatment for IPF in the US and limited therapeutic options available for individuals with mild-to-moderate IPF in the EU, Canada, and Asia.

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Kathy Biggs, PFF Ambassador

Kathy Biggs, PFF Ambassador, at Medical University of
South Carolina's "IPF Education Day."

Farah Stokes, RN, BSN and Kathy Biggs

Farah Stokes, RN, BSN, ILD Nurse Coordinator at Medical
University of South Carolina with Kathy Biggs.
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