ANNUAL REPORT FISCAL YEAR ENDING JUNE 30, 2016 we imagine a world without pulmonary fibrosis LETTER FROM OUR INTERIM CEO AND CHIEF MEDICAL OFFICER Friends, The past year has been one of the most exciting yet for the Pulmonary Fibrosis Foundation (PFF). In March of 2016, the first patient was enrolled into the PFF Patient Registry, a valuable research tool available in the fight against pulmonary fibrosis (PF). The Registry is a collection of information about PF pa- tients, including their diagnosis and how it was made, lab and test results, and medical outcomes. You can read more about the Registry and the role it is playing in the search for a cure on page 4. In this report you will also read about the PFF Summit 2015, our largest Summit yet (page 10), Broadway Belts for PFF! 2016 (page 14), the recipients of the research awards the Foundation sponsored in 2015 (page 18), and much more. We are deeply grateful to the PFF’s donors, sponsors, partners, and volunteers. Your contributions lay the groundwork for everything the PFF accomplishes, and help bring us closer to realizing our shared vision of a world without pulmonary fibrosis. Sincerely, SCOTT STASZAK GREGORY P. COSGROVE, MD, FCCP INTERIM CHIEF EXECUTIVE OFFICER CHIEF MEDICAL OFFICER 2015/2016 ANNUAL REPORT 1 OUR MISSION OUR VISION We imagine a world without pulmonary fibrosis. The Pulmonary Fibrosis Foundation (PFF) mobilizes people and resources to provide access to high-quality care and leads research for a cure so people with pulmonary fibrosis (PF) will live longer, healthier lives. WHAT WE DO By actively engaging the PF community, the Pulmonary Fibrosis Foundation has developed essential programs available to those living and working with pulmonary fibrosis. Our signature programs include: • PFF Care Center Network WHAT IS PULMONARY FIBROSIS AND • PFF Patient Registry • PFF Patient Communication Center WHAT ARE THE CAUSES? • PFF Ambassador Program • An international network of support groups and online communities Pulmonary fibrosis is a condition in which There are many types of PF for which • PFF Summit the walls of the air sacs of the lungs become we don’t know the cause. One specific • A comprehensive suite of disease education materials thickened and stiff due to a build up of type of PF of unknown cause is called scar tissue. This scar tissue makes it more “idiopathic pulmonary fibrosis” or Our expert Medical Advisory Board and the biennial PFF Summit allow us difficult for the lungs to transfer oxygen into IPF. IPF is diagnosed when either a to maintain an ongoing dialogue with physicians, researchers, industry the bloodstream. computerized axial tomography scan or representatives, and the patient community. The Foundation fosters a a lung biopsy show certain findings in collaborative environment between these groups. Our peer-reviewed Pulmonary fibrosis can result from a number the absence of an identifiable cause. research program supports projects that improve understanding of of causes: certain environmental agents IPF is a progressive, fatal lung disease, (molds, birds, fibers, dusts), medications for which there is no known cure. pulmonary fibrosis and can lead to successful therapies. (antibiotics, chemotherapy), radiation therapy, autoimmune diseases (scleroderma, The Pulmonary Fibrosis Foundation has a four-star rating from Charity rheumatoid arthritis), or a genetic Navigator and is a Better Business Bureau accredited charity. predisposition. However, in most situations the cause is unknown. 2 PULMONARY FIBROSIS FOUNDATION 2015/2016 ANNUAL REPORT 3 A MAJOR MILESTONE FOR THE PFF PATIENT REGISTRY In the spring of 2016, the Foundation reached a much-anticipated milestone: the first patient “Information collected through the PFF Patient Registry will help facilitate ongoing research necessary to better understand how we can help people living with multiple types was enrolled into the PFF Patient Registry, the most comprehensive research tool available to of pulmonary fibrosis, including other diseases that often include PF, such as rheumatoid- help us in the fight against pulmonary fibrosis. arthritis associated pulmonary fibrosis,” said Kevin Flaherty, MD, MS, Steering Committee Chairman, PFF Care Center Network and PFF Patient Registry. “This project provides an The PFF Patient Registry will permit researchers, through the generous contribution of incredible opportunity to advance progress toward a cure for pulmonary fibrosis.” medical data by patients, to gain a better understanding of how different forms of PF The Foundation is grateful to its CCN partners across the country. To learn more about the progress, who is affected by PF and how patients respond to different treatments. Patient CCN and to view a full list of the sites, visit pulmonaryfibrosis.org/medical-community/pff- enrollment takes place at sites in the PFF Care Center Network (CCN), a national network care-center-network. of 40 sites in 27 states across the country. The Registry includes a biorepository, where patients can choose to also donate blood samples. Data from the Registry will help inform best practices in care and identify potential treatment targets. The Registry will also assist in identifying patients who may wish to participate in clinical trials. The Registry was made possible, first and foremost, by the patients who agreed to participate. We can’t thank them enough for their contributions. The initiative was also made possible thanks to the hard work of our PFF Care Center Network colleagues, Registry funders, dedicated volunteers, and partners. Funding for the Registry was generously provided by founding partner Genentech, visionary partner Boehringer Ingelheim, The Cowlin Family Fund at the Chicago Community Trust, the Rattner Family Foundation, the McQuaid Family Foundation, InterMune, Biogen and the Jenny H. Krauss and Otto F. Krauss Charitable Foundation Trust, in memory of Stephen N. Dirks. Further PFF CARE CENTER donations will provide expansion opportunities that will enhance this research tool. NETWORK AND REGISTRY SITES To contribute to this important program, please donate now. For more information, call 844.TalkPFF (844.825.5733) or email [email protected]. 4 PULMONARY FIBROSIS FOUNDATION 2015/2016 ANNUAL REPORT 5 HIGHLIGHTS 2015 September THE PF COMMUNITY LET THE WORLD KNOW ABOUT PF DURING PULMONARY FIBROSIS AWARENESS MONTH US CONGRESS FORMALLY RECOGNIZED PULMONARY FIBROSIS AWARENESS MONTH November LARGEST-EVER PFF SUMMIT TOOK PLACE IN WASHINGTON, DC THE PFF ACQUIRED THE RIGHTS TO THE DAUGHTERS OF PF PROGRAM FROM THE COALITION FOR PULMONARY FIBROSIS. THE FOUNDATION RELAUNCHED THE PROGRAM IN APRIL OF 2016 UNDER THE NAME PFF DAUGHTERS PFF Senior Medical Advisor, Research Development, Harold R. Collard, MD, speaking at the PFF Summit 2015, the largest Summit conference to date. December ON DECEMBER 1, GIVING TUESDAY, PFF SUPPORTERS RAISED OVER $31,000 2016 February THE 6TH ANNUAL BROADWAY BELTS FOR PFF! RAISED $180,000 TO BENEFIT THE PF COMMUNITY March FIRST PATIENT WAS ENROLLED IN THE PFF PATIENT REGISTRY April PFF DAUGHTERS RELAUNCHED The performing cast of Broadway Belts for PFF! Michele Peters, PFF Ambassador, thanking the PF community for a successful Giving Tuesday. 6 PULMONARY FIBROSIS FOUNDATION 2015/2016 ANNUAL REPORT 7 PFF DAUGHTERS members use their collective voice to PFF PATIENT COMMUNICATION CENTER (PCC) increase awareness about pulmonary fibrosis, advocate staff is available to listen and lend support by for improved care, and raise support for continued personally answering every call and email and offering research efforts. Membership in the PFF Daughters educational resources to patients, caregivers, and program is open to anyone affected by pulmonary health care providers. fibrosis—past, present, and future. The inaugural application cycle opened in April of 2016. need info? call (toll free) 844-TalkPFF PFF Daughters The PFF’s Information Hub A NEW PFF SIGNATURE PROGRAM PROVIDING ANSWERS AND SUPPORT The PFF Daughters began with the Coalition the population and engaging them in the For those living with pulmonary fibrosis, obtaining someone who’s knowledgeable not only for Pulmonary Fibrosis as a project focusing fight against PF.” the most accurate and current information can be about the Foundation and the resources we on women and girls whose parents had a challenging and frustrating task. The PFF Patient offer but is also well-informed about the been diagnosed with PF. Now part of the “We’re here to fully support the PFF’s drive Communication Center (PCC) provides patients, disease itself.” Foundation’s suite of signature programs, and direction through advocacy, awareness caregivers, and health care providers with the The PCC received over 3,000 inquiries PFF Daughters brings members together to and fundraising,” says Lisa Boyd, PFF most up-to-date medical information, between July 1, 2015 and June 30, 2016. increase awareness about PF, advocate for Daughters Steering Committee Chair and a communicates the availability of support services, The top requests were for general disease improved care for people with PF, and raise Team PFF leader. “All three are absolutely and provides information about other essential information and education materials. support for continued research efforts. vital aspects of keeping a foundation resources. Questions came in from 35 countries around Membership in the PFF Daughters program healthy and strong. We take all our “People find a lot of information online and some the world, including Australia, Argentina, is open to anyone affected by pulmonary direction from the Foundation and are of it may be helpful,” says David J. Lederer, MD, Canada, India, Mexico, Italy, Puerto Rico and fibrosis — past, present, and future. there to support them.” MS, Senior Medical Advisor, Education and the United Kingdom. Callers contacted the “This is a group that’s really passionate Awareness. “But a lot of information may be PCC from 45 US states. The top five states about spreading awareness of PF,” says misleading or frightening and needs to be put into were California, Florida, New York, Texas and Kate Gates, PFF Director of Programs. context. Reliable information about the disease, Illinois.