Breathe Bulletin Spring 2015

in this issue BREATHE BULLETIN VOLUME 15

| ISSUE 01

SPRING 2015

SPECIAL INTEREST PFF INITIATIVES EXPAND 04

PFF’s Medical Team Expands as the Foundation Develops

07

Join Us for PFF Summit 2015

08 Faculty / Program 11 Poster Presentation 12 CCN More Than Doubles with 12 New Sites 14

PFF Programs Update

REGULAR FEATURES COMMUNITY ENGAGEMENT 16

September is Global Pulmonary Fibrosis Awareness Month

18

PFF Advocates Raise Funds and Awareness

18 Julie Halston and Ralph Howard 19 Nick DeVito 20 Colleen and Martin Attwell 21 Cheryl and Larry Runyon 22

Spotlight on Philanthropy: Giving Back and Raising Awareness

24

Leanne Storch Support Group Fund Supports Free Clinic… and More

26

PFF Research Awards Help Investigators Make New Inroads into Understanding PF

PFF NEWS 28

Broadway Belts —Turning Talents Toward a Pulmonary Fibrosis Cure

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2015 Calendar

Breathe Bulletin is published biannually by the Pulmonary Fibrosis Foundation. Opinions expressed by the authors and interviewees are their own and do not necessarily reflect the policies of the Pulmonary Fibrosis Foundation.

Disclaimer The material contained in this newsletter is for educational purposes only and should not be considered as medical advice.

Consult your health care provider for treatment options.

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. © 2015 Pulmonary Fibrosis Foundation. All rights reserved.

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Pulmonary Fibrosis Foundation 230 East Ohio Street, Suite 304 Chicago, Illinois 60611-3201 844.Talk PFF (844.825.5733) or +1 312.587.9272 www.pulmonaryfibrosis.org

DESIGN: BOCKOS DESIGN, INC.

KEVIN ALVEY

ADVOCACY / RESEARCH

LETTER FROM OUR CEO

DEAR FRIENDS, In this issue of the Breathe Bulletin there are a number of very interesting and timely articles.

I would like to highlight a few items.

As we mentioned in the previous Breathe Bulletin, two new therapies (Esbriet® and Ofev®) were approved by the US Food and Drug Administration (FDA) last October. This accomplishment is a true milestone and was the result of a tremendous joint effort by the Pulmonary Fibrosis Foundation, patients, physician researchers, the FDA , and industry. As we recently announced (and is also discussed in this issue of the Bulletin), we expanded the PFF Care Center Network (CCN) to 21 centers throughout the United States.

The CCN, combined with the implementation of the PFF Patient Registry, will serve to foster education, awareness, and research. With continued collaboration in the PF community, the CCN and PFF Patient Registry will help identify additional therapies and in turn benefit more people living with pulmonary fibrosis.

Please mark your calendars for November 12–14, which is when the PFF Summit will take place in Washington, DC. Much important information is disseminated at the conference. The Summit is a unique forum providing researchers, clinicians, patients, and caregivers from around the world an opportunity to interact and learn from many prominent thought leaders in the PF community. The ultimate goal of the Summit is to foster collaboration that will enhance patient care and stimulate research that will lead to better treatments.

Everyone who has attended the two previous events found them to be extremely rewarding and illuminating.

The Foundation has always had a deep commitment to advance and provide funding for patient and caregiver support groups. In 2012, we initiated the Leanne Storch Support Group Fund to provide grants to support groups. Through generous funding in part from Boehringer Ingleheim, we will be able to dramatically increase the number of grants that we will now award.

These grants can be utilized to host educational events, start a new group, or fund other related support group activities. In this issue of the Bulletin, there is a very inspiring story of how one grant was used to support a free PF clinic in San Antonio.

The Foundation is extremely grateful for all the support we receive from the PF community. In this issue a number of fundraising events are highlighted. Some of these took place during Global Pulmonary Fibrosis Awareness Month — which was an unbelievable success — while many others occur throughout the year. If you would like to organize you own event, a number of ideas are discussed in this issue and also information is provided on how the Foundation can assist you. There is nothing more rewarding than conducting a successful event and also increasing disease awareness at the same time.

We are deeply indebted to all those who support us with their time, resources, and financial commitment.

Your support is essential for us to continue to expand the many educational, patient and caregiver support, and research programs at the Foundation, so that we may be able to one day eradicate this deadly disease.

With my warmest regards,

DANIEL M. ROSE, MD

Chief Executive Officer

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PFF’S MEDICAL TEAM EXPANDS AS THE FOUNDATION DEVELOPS As the Pulmonary Fibrosis Foundation (PFF) grows and expands its programs, it has also been necessary to increase the Foundation’s medical staff and advisors. This past year, the Medical Advisory Board (MAB) welcomed a new leadership team and added several new members. Also, a number of key PF experts joined the Foundation’s medical staff.

Medical Advisory Board The Medical Advisory Board (MAB), comprised of health care professionals and research scientists with expertise in pulmonary fibrosis (PF), provides knowledge and guidance to the Foundation. As the Foundation has developed new initiatives, the responsibilities and functions of the MAB have also increased.

Building on the hard work and dedication of his predecessor, Kevin K. Brown, MD, the MAB’s new Chairman is JESSE ROMAN, MD (former Chairman of the MAB’s Research Advisory Committee). Dr. Brown now serves as Chairman emeritus.

Dr. Roman is Professor of Medicine, Pharmacology, and Toxicology; Chairman, Department of Medicine; Chief, Division of Pulmonary, Critical Care, and Sleep Disorders Medicine; and Distinguished University Scholar, at the University of Louisville. He was previously Professor of Medicine and Director of the Division of Pulmonary, Allergy, and Critical Care Medicine at Emory University.

The members of the MAB hold their annual meeting each May in conjunction with the American Thoracic Society meeting. The MAB’s work is divided among several groups: the Research Advisory Committee, the Education Working Group, and the International Working Group.

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“The PFF is growing so much that we now have the ability to tackle problems in a more sophisticated way,” Dr. Roman explained. “Having committees and working groups continuously addressing issues important to the organization ensures we move forward more significantly between annual meetings. It also gives more people a chance to bring their expertise to specific issues and then bring their recommendations to the larger group.”

ANDREW LIMPER, MD (Professor of Medicine, Division of Pulmonary and Critical Care Medicine, Mayo Clinic, Rochester, MN), chairs the Research Advisory Committee (RAC), which oversees the peer review evaluations for the research grant program and poster selection at the PFF Summit. The Committee’s primary goal is to supervise the Foundation’s “Research Fund to Cure PF” (to donate visit www.pulmonaryfibrosis.org/ donate). The RAC also provides guidance to the Foundation for approval of other research grants.

Several years ago, the Research Advisory Committee began supervising the Foundation’s research funding.

“As the PFF grew and evolved, we felt it was time to give strength to the research program,” Dr. Roman said.

The Committee delineates well-defined criteria and a formal review process for grant selection consistent with professional research standards. Investigators who have been funded by the PFF have been “very successful,” Dr. Roman reported. He added, “many of the early investigators have received continued funding for their PFF projects from other organizations.” (See page 26 for a report from several current PFF research awardees.)

PFF Medical Team Expands To maximize its effectiveness, the PFF has expanded its medical staff to include several important thought leaders in the PF community. These outstanding individuals share the Foundation’s vision to improve the quality of life for those affected by PF and to ultimately find a cure. These physicians help oversee many of the Foundation’s valuable and significant programs, including the PFF Summit, the PFF Care Center Network (CCN), the PFF Patient Registry, the PFF Disease Education Webinar Series, and the PFF Patient Communication Center.

GREGORY P. COSGROVE, MD Chief Medical Officer

The Education Working Group is chaired by JEFFREY J. SWIGRIS, DO, MS (Associate Professor,

Department of Medicine, Division of Pulmonary, Critical Care and Sleep Medicine, National Jewish Health, Denver, CO). The group advises the PFF on the development and implementation of patient and professional educational activities and materials.

This includes the PFF Summit, webinars, symposia, brochures, newsletters, bulletins, press releases, and website content. The Chair of the Education Working Group also supports the PFF Summit. “Right now this group is focused on creating the educational agenda for the upcoming PFF Summit,” Dr. Roman said.

The International Working Group, chaired by LUCA RICHELDI, MD, PHD (Professor of Respiratory Medicine, Chair of Interstitial Lung Disease, University of Southampton, England), advises the PFF on the development of international partnerships, international patient education activities, support groups, regional cultural issues, and research activities. “We hope to gather all the groups working on PF across the world to use their collective strength,” Dr. Roman said. “Our main job right now is to strengthen connections among PF efforts in different nations.”

As Chief Medical Officer, Dr. Cosgrove oversees medical affairs and serves as the primary medical consultant for the PFF. He advises in defining priorities, creating new initiatives, and enhancing existing programs for the Foundation. Dr. Cosgrove also serves as the official medical spokesperson for the PFF, briefing the media on PF issues in order to help increase disease awareness and inform individuals on how to find appropriate medical care. Dr. Cosgrove has had a longstanding relationship with the Foundation. From 2010 to 2014 he served on the Medical Advisory Board and on the Research Advisory Committee. Additionally, Dr. Cosgrove was Co-Chair of the PFF Summit 2013: From Bench to Bedside.

Dr. Cosgrove is currently Associate Professor of Medicine in the Division of Pulmonary and Critical Care Medicine at the University of Colorado School of Medicine. His research focuses on the fibroproliferative response of the lung following injury and investigating novel therapies for the treatment of interstitial lung disease. Dr. Cosgrove sees patients in the Interstitial Lung Disease Clinic at National Jewish Health in Denver, CO. continued on next page >

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KEVIN R. FLAHERTY, MD, MS Steering Committee Chairman, PFF Care Center Network and PFF Patient Registry

As Chair of the Steering Committee of the PFF Care Center Network and the PFF Patient Registry, Dr. Flaherty helps guide the development and implementation of these two important initiatives that will improve the quality of life for those affected

by PF. The CCN includes both academic medical centers and community-based practices that have proven experience and expertise in the care of patients with fibrotic lung disease and that utilize a multidisciplinary approach to deliver comprehensive patient care.

The Registry is a collection of patient information for use by qualified investigators to better understand the fibrotic lung diseases and help to develop more effective therapies.

With a background in biostatistics and clinical studies, Dr. Flaherty is uniquely qualified to help researchers fully leverage data gleaned from the Registry.

Dr. Flaherty is Professor of Medicine in the Division of Pulmonary and Critical Care Medicine, Department of Internal Medicine, at the University of Michigan Health System in Ann Arbor, MI. DAVID J. LEDERER, MD, MS Senior Medical Advisor, Education and Awareness

Dr. Lederer liaises with the PF community to help make complex and confusing information about PF less difficult to understand. Working with Patient Relations and Medical Affairs, he produces and reviews content for PFF educational materials and responds to medical inquiries submitted to the PFF Patient Communication Center.

As the PFF “interpreter” of the ever-changing pulmonary fibrosis landscape, he is a resource for Foundation staff, patients, caregivers, and families providing the most up-to-date and accurate information. Dr. Lederer is also an official spokesperson for the PFF, addressing current issues including the importance of a timely, accurate diagnosis and the value of high quality patient care.

Dr. Lederer is Associate Professor of Medicine and Epidemiology in the Division of Pulmonary, Allergy, and Critical Care Medicine at Columbia University Medical Center in New York City. He specializes in the care of adults with interstitial lung disease and those who have undergone lung transplantation. Dr. Lederer is a principal investigator of the National Institutes of Health-funded MESA Lung Fibrosis Study.

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HAROLD R. COLLARD, MD Senior Medical Advisor, Research Advisory Forum Chair, PFF Summit 2015 Chair

Dr. Collard joined the PFF as a Senior Medical Advisor effective January 2015. He has a long history of working closely with the PFF, serving on its medical and research advisory boards for many years, developing the PFF Care Center Network (CCN) and the PFF Patient Registry, and helping organize the PFF’s first Summit in 2011.

In his new role, Dr. Collard will provide strategic guidance and oversight to the PFF, with particular attention to the development of the PFF Research Advisory Forum. The Research Advisory Forum will bring together patients, academic researchers, industry leaders, and government representatives to promote and leverage PFF resources — in particular the CCN and Registry — for the advancement of research efforts worldwide.

Additionally, Dr. Collard is the Chair of the PFF Summit 2015, where he is responsible for overseeing the clinical, scientific, and educational content of the conference. Working with PFF leadership, Dr. Collard will work to ensure that the diverse needs and interests of the PF community are reflected in the choice of topics and speakers, and that the core mission of the Summit is achieved.

Dr. Collard is Associate Professor of Medicine, Division of Pulmonary and Critical Care Medicine, and Director of the Interstitial Lung Disease Program, University of California, San Francisco (UCSF) School of Medicine. His primary interest is in the management of patients with interstitial lung disease, including how best to diagnose and treat interstitial lung disease and how the condition impacts quality of life.

IMPORTANT DATES

PROGRAM AT A GLANCE

Registration Opens

THURSDAY, NOVEMBER 12

CONFERENCE VENUE

Arrivals / Registration

AND HOTEL ACCOMMODATIONS

April 28, 2015 Call for Abstracts

11:00 a.m.–8:00 p.m.

June 1–August 1, 2015

Pre-Session for Patients and Caregivers

Exhibitor Deadline

1:00 p.m.–4:00 p.m.

October 1, 2015 Hurry, space is limited!

Welcome Reception and Poster Presentation

Hotel Group Rates Deadline

FRIDAY, NOVEMBER 13

www.marriott.com/hotels/travel/wasjw-jwmarriott-washington-dc/

Registration and Continental Breakfast

Guest Room Block Rates

Info/Registration

7:00 a.m.–8:15 a.m.

Rate: $259 per room night (single and double)

888.733.6741 or +1 312.587.9272 summit@pulmonaryfibrosis.org www.pffsummit.org

Plenary Session

Reservations

8:15 a.m.–10:00 a.m.

To make a reservation, call the JW Marriot Washington, DC at 800.393.2503 or +1 202.393.2000 and reference the PFF Summit 2015

October 8, 2015, 5:00 p.m. ET

5:00 p.m.–8:00 p.m.

Sessions for Professionals

10:30 a.m.–4:45 p.m.

Sessions for Patients and Caregivers

10:30 a.m.–2:45 p.m.

Cocktail Hour / Networking Dinner

6:30 p.m.–10:00 p.m.

SATURDAY, NOVEMBER 14 Registration and Continental Breakfast

7:00 a.m.–8:15 a.m.

Plenary Session

8:15 a.m.–10:00 a.m.

Sessions for Professionals

JW Marriott Washington, DC

1331 Pennsylvania Avenue, NW Washington, DC 20004 Phone: 202.393.2000

Deadline for group rates: Thursday, October 8, 2015, 5:00 p.m. ET

“Customized breakout sessions intermixed with conference-wide plenary sessions will set the stage for audience participation and interaction between all attendees.”

HAROLD R. COLLARD, MD / SUMMIT CHAIR

10:30 a.m.–5:00 p.m.

Sessions for Patients and Caregivers

10:30 a.m.–3:00 p.m.

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FACULTY AS OF 03.06.15

HAROLD R. COLLARD, MD PFF SUMMIT CHAIR

JOAO ALBERTO M. DE ANDRADE, MD

program

WILLIAMSON BRADFORD, MD, PHD KEVIN K. BROWN, MD GREGORY P. COSGROVE, MD SONYE K. DANOFF, MD, PHD JERRY EU, MD KEVIN R. FLAHERTY, MD, MS CHRISTINE KIM GARCIA, MD, PHD CHRIS GARVEY, FNP, MSN, MPA, FAACVPR

plenary sessions Both sessions are open to all attendees, providing interactive discussions of these important topics.

KEVIN F. GIBSON, MD

FRIDAY AM

DEBORAH GILLMAN, PHD

THE FUTURE OF DRUG DEVELOPMENT IN PF

MARILYN K. GLASSBERG, MD JANE HARRISON, LCSW, CCTSW ERICA L. HERZOG, MD, PHD ANNE E. HOLLAND, MD SUSAN S. JACOBS, RN, MS

This keynote lecture on drug development in PF is followed by a panel discussion with academics, industry representatives, and patients.

SATURDAY AM

TALMADGE E. KING, MD

COLLABORATIVE NETWORKS AS TOOLS FOR IMPROVING CLINICAL CARE

MARYL KREIDER, MD, MSCE

Pat Furlong (President and CEO, Parent Project Muscular Dystrophy) delivers this keynote lecture on the power of collaborative networks to advance clinical care for patients with rare diseases. The keynote is followed by a panel discussion with academics, industry representatives, and patients.

LISA LANCASTER, MD JOSEPH A. LASKY, MD DAVID J. LEDERER, MD, MS JOYCE LEE, MD ANDREW H. LIMPER, MD KATHLEEN O. LINDELL, PHD, RN DAVID A. LYNCH, MD FERNANDO MARTINEZ, MD, MS A. BRUCE MONTGOMERY, MD STEVEN D. NATHAN, MD RAFAEL J. PEREZ, MD PETER J. PITTS GANESH RAGHU, MD LUCA RICHELDI, MD, PHD JESSE ROMAN, MD IVAN O. ROSAS, MD DANIEL M. ROSE, MD CHRISTOPHER J. RYERSON, MD CHRIS D. SCHUMANN, MS, RCEP, CES MARVIN I. SCHWARZ, MD JEFFREY J. SWIGRIS, DO, MS ANDREW M. TAGER, MD TIMOTHY P. M. WHELAN, MD

View a current list at www.pffsummit.org.

SUMMIT EDUCATION / ORGANIZING COMMITTEE HAROLD R. COLLARD, MD COMMITTEE CHAIR

ZOË D. BUBANY

JESSE ROMAN, MD

GREGORY P. COSGROVE, MD

DANIEL M. ROSE, MD

KEVIN R. FLAHERTY, MD, MS

CHRIS D. SCHUMANN, MS, RCEP, CES

SUSAN S. JACOBS, RN, MS

JEFFREY J. SWIGRIS, DO, MS

DOLLY KERVITSKY, CRT, CCRC

PATTI TUOMEY, EDD

DAVID J. LEDERER, MD, MS KATHLEEN O. LINDELL, PHD, RN 08

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professional sessions FRIDAY

SATURDAY

Friday’s sessions for professionals will focus on the science of pulmonary fibrosis (PF).

Saturday’s sessions for professionals will focus on the clinical care of PF.

TRANSLATIONAL SCIENCE: THE PROMISE

CLINICAL CARE: NEW AND EVOLVING

OF MOLECULAR AND GENETIC BIOMARKERS

TREATMENT STRATEGIES

Biomarkers are an exciting and tremendously promising area of research in PF. This session will feature talks from leading translational scientists outlining the progress being made and challenges faced in biomarker development. Topics will include the use of biomarkers for diagnosis and prognosis in PF, and the central role of biomarkers in exploring the concept of precision medicine.

This session will focus on the current and future pharmacological treatments for patients with PF. Clinical leaders in PF will discuss when and how to use current pharmacological therapies, the management of side effects and complications of PF, and review potential pharmacological therapies currently being studied in clinical trials.

BASIC SCIENCE: LUNG REMODELING AND REGENERATION

CLINICAL CARE: COMPREHENSIVE CARE — BEYOND PHARMACOLOGICAL THERAPIES

Session participants will discuss the current status of scientific knowledge regarding one of the central pathobiological issues in PF — structural remodeling of the lung. Leading scientists in the field will address the current state of knowledge in this area and the potentially revolutionary impact of regenerative medicine on the future treatment of PF.

Appropriate management of patients with PF includes much more than pharmacotherapy for PF. It takes a team of providers to deliver comprehensive care. This session will involve a diverse group of expert providers discussing the impact of managing comorbidities and of interventions like exercise, education, and life planning.

CLINICAL SCIENCE: PATIENT CENTERED END-

At the core of the management of PF patients is the multidisciplinary team discussion. This process is best learned through participation, and so this session will use case presentations to illustrate the intellectual and operational requirements of effective multidisciplinary team discussion. Cases will be presented to an expert pulmonologist, radiologist, and pathologist. Audience members will be engaged in the discussion of diagnosis and management recommendations.

POINTS: SYMPTOMS AND FUNCTIONAL STATUS

A central goal of patients with PF is to feel better and do more. Unfortunately, most studies to date have failed to demonstrate an impact on these important outcomes.

This session will feature top clinical researchers discussing the importance and the challenges of measuring patient-centered outcomes such as symptoms and functional status in PF trials.

CLINICAL CARE: MULTIDISCIPLINARY DIAGNOSIS

CME/CE INFORMATION

CME/CE activity details are forthcoming.

Visit www.pffsummit.org for the latest information.

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program patient and caregiver sessions THURSDAY PRE-CONFERENCE INTERACTIVE SESSION TAKING CARE OF YOURSELF — SHARED HEALTH CARE DECISION MAKING

Shared health care decision making is a collaborative process that allows patients and their clinicians to make decisions together, taking into account scientific evidence, benefits versus risks, as well as the individual patient’s needs. It has been shown to be associated with greater patient involvement with medication decisions, adherence, self-efficacy, self-care behaviors and patient satisfaction.

This session will begin with an introduction by Kathleen O. Lindell, PhD, RN on the importance of active participation by patients and caregivers in management of their pulmonary fibrosis. This will be followed by interactive small group sessions on pulmonary rehabilitation, oxygen therapy, and patient and caregiver coping skills.

FRIDAY PULMONARY FIBROSIS: WHAT AND WHY

Many patients and caregivers struggle to understand PF, what can cause it, and what it means for the future. This session addresses these issues with the goal of attendees leaving with a clear understanding of PF and how it affects lung function — the most common causes of PF — and how physicians try to provide guidance regarding prognosis and the goals of therapy.

PULMONARY FIBROSIS: MANAGEMENT STRATEGIES I

Once a patient is diagnosed with PF, there are important decisions to be made regarding the comprehensive approach to management. This session will review the key components of this initial therapy including choice of pharmacological therapy, non-pharmacological interventions such as exercise, education and oxygen, and the treatment of common comorbidities.

SATURDAY PULMONARY FIBROSIS: MANAGEMENT STRATEGIES II

This session will continue the discussion of the management of PF with a review of issues confronted in a more advanced disease state. These include symptom-focused management, lung transplantation, and palliative/end of life care. It is hoped that attendees will leave this session with an appreciation for and realistic understanding of these interventions and their important role in comprehensive management.

PATIENT CENTERED RESEARCH IN PULMONARY FIBROSIS

There is a clear need for continued research in PF, and a renewed focus on ensuring that questions being addressed are the ones most relevant to all stakeholders, most centrally, patients. This session will discuss patient goals and priorities for research and how to achieve them.

To register for PFF Summit 2015, visit www.pffsummit.org/register.html.

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poster

presentation

CALL FOR ABSTRACTS The Pulmonary Fibrosis Foundation (PFF) invites academic and industry researchers to submit abstracts of their scientific research for poster presentation at the PFF Summit 2015: From Bench to Bedside beginning June 1, 2015. All applicants must be registered to attend the PFF Summit 2015 in order to be considered for presentation. The call for abstracts will close on August 1, 2015.

Subject matter deemed appropriate for poster presentation at the PFF Summit 2015 include original ideas that will help improve the understanding of pulmonary fibrosis in the following areas: • Basic Research • Translational Research • Clinical Research • Social Science/Quality of Life Research A panel from the PFF’s Research Advisory Committee (RAC) will review all academic abstracts. Notification of the Committee’s decision will be completed by September 1, 2015.

Industry posters are not subject to peer review. Space can be reserved by submitting an abstract and acceptance is based on a first-come, first-serve basis. Space allotted will be confirmed by September 1, 2015.

PRESENTATION AND RECOGNITION The Poster Presentation will take place on Thursday, November 12 from 5:00 p.m. to 8:00 p.m. in conjunction with the Welcome Reception.

Presenting authors are expected to be present at their posters between 5:00 p.m. and 7:00 p.m. Academic posters will be evaluated by the RAC selection panel and the top five poster presenters will be recognized at the Networking Dinner on Friday, November 13. The top three poster presenters will also be selected to discuss their research during one of the three individual sessions for professionals on Friday, November 13.

Travel awards will be granted to the top five presenting authors, which will include reimbursement for airfare up to $500 for domestic travel, or $1,000 for international travel, 2 nights lodging at the JW Marriott, and up to $100 for ground transportation. Note: Industry posters are exempt from scoring and will not be considered for awards.

• First place: $1,500 and travel award • Second place: $1,000 and travel award • Third place: $500 and travel award • Honorable mentions (2): travel award Learn more about the call for abstracts and poster presentation at www.pffsummit.org/ posters.html.

“My family is very strong in our belief that a lot of research needs to be done on this disease. Sponsoring the Poster Presentation at the PFF Summit helps present current research to hundreds of physicians, patients, families, and caregivers all in one event.”

NICK DEVITO / PFF ADVOCATE, PETE DEVITO MEMORIAL FOUNDATION

The Welcome Reception and Poster Presentation are made possible by our presenting sponsors, and by a generous donation made by the Pete DeVito Memorial Foundation.

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CCN MORE THAN DOUBLES WITH 12 NEW SITES Less than two years after its formation, the PFF Care Center Network (CCN) has more than doubled the number of sites. Each CCN site brings together multiple medical disciplines that will facilitate the diagnosis and enhance the treatment for pulmonary fibrosis (PF) patients.

With the addition of 12 sites, the CCN now includes 21 medical centers in 20 states. Launched in 2013, the CCN connects leading medical centers with specific expertise in treating fibrotic lung diseases that are often difficult to diagnose, complicated to manage, and are usually associated with survival rates of less than five years.

“As the leading advocate for the pulmonary fibrosis community, we are dedicated to advancing the care of people living with this deadly disease, and this starts with providing greater access to experienced care teams,” said Gregory P. Cosgrove, MD, Chief Medical Officer of the PFF. “Working together, institutions within the network will identify and share best practices, which will foster better patient care and ultimately enable more institutions that embrace these practices to be PFF Care Center Network sites.”

The CCN engages medical centers that use a multidisciplinary approach to deliver comprehensive patient care. These specialized care teams include individuals with expertise in pulmonary medicine, rheumatology, radiology, pathology, gastroenterology, and thoracic surgery. This multipronged, collaborative approach is critical to managing a complex disease like pulmonary fibrosis and ensuring individuals receive an accurate diagnosis, obtain quality clinical care, and acquire important support services.

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The PFF Care Center Network sites will also collect data regarding patient care and outcomes related to different treatment plans through their participation in the PFF Patient Registry. The PFF Patient Registry is a collaborative effort that will bring together multiple stakeholders including patients, health care providers, and researchers. The Registry is an electronic database of patient information that will be de-identified (made anonymous) and independently managed by a datacoordinating center (DCC). The DCC will aggregate each patient’s information, which will be collected in a consistent manner from the designated Registry sites.

PF researchers — particularly members of the CCN — will then analyze data from the Registry in order to better understand the disease and develop more effective care strategies and therapies.

The CCN sites are selected through an objective review procedure. The individuals who carefully review the site applications include members of the PFF Board of Directors, the PFF Medical Advisory Board, the PFF Care Center Network, and the PFF Patient Registry Steering Committee. “When selecting sites to add to the PFF Care Center Network, we consider a center’s specific programs and its geographic location in order to best serve the needs of the broader pulmonary fibrosis community,” said Kevin R. Flaherty, MD, MS, Chairman of the PFF Care Center Network and the PFF Patient Registry Steering Committee.

“The new centers we selected provide high quality patient care and an individualized approach to treatment in accordance with best, evidence-based recommendations,” Dr. Flaherty continued. “We welcome these new centers into the program and look forward to continuing to expand the network in the coming year.”

pulmonaryfibrosis.org

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The University of Kansas Hospital PFF CARE CENTER NETWORK SITES

Inova Fairfax Medical Campus Falls Church

Kansas City

Interstitial Lung Disease Clinic at University of Washington Medical Center

Tulane University School of Medicine

University of Miami Miller School of Medicine Miami

University of Michigan Health System

New Orleans

Ann Arbor

Seattle

UCSF Interstitial Lung Disease Program of Pennsylvania Inova Fairfax Medical Campus* UCSF InterstitialUniversity Lung Disease Program San Francisco Philadelphia Mayo Clinic in Rochester, Minn.

Rochester

FALLS CHURCH

University of Alabama at Birmingham SAN FRANCISCOUniversity of Pittsburgh Dorothy P. & Richard P. Birmingham

Medical University of South Carolina Charleston

Interstitial National Jewish Health Denver

Simmons Center at UPMC

University of Arizona Interstitial Lung

Pittsburgh

Arizona Medical Center - University BIRMINGHAM Campus in Tucson

Nashville

“We are honored that the Pulmonary Fibrosis Foundation has recognized the quality of our programs and the expertise our physicians have in treating patients with pulmonary fibrosis.”

Lung Disease Clinic University of Alabama at Birmingham* Disease Program at the University of Vanderbilt University Medical Center

at University of Washington

New York - Presbyterian/Columbia University Medical Center and New YorkMedical Center Presbyterian/ Weill Cornell Medical Center*

Tucson

University of Chicago Pulmonary Clinic University Chicago

New York

SEATTLE Piedmont Healthcare

St. Louis Pulmonary Clinic of Chicago

University of Louisville School of Medicine CHICAGO Louisville

Atlanta

Mayo Clinic in Rochester, Minn.* *Please note there are two locations for this PFF Care Center Network site.

ROCHESTER

Washington University School of Medicine in St. Louis Yale School of Medicine New Haven

CRITICAL CARE AND ENVIRONMENTAL MEDICINE, TULANE UNIVERSITY SCHOOL OF MEDICINE

of Medicine

CHARLESTON

National Jewish Health

INTERNAL MEDICINE AND CHIEF OF PULMONARY DISEASES,

University of Louisville School

Medical University of South Carolina* LOUISVILLE pcc@pulmonaryfibrosis.org 230 East Ohio Street, Suite 304, Chicago, Illinois 60611 844.TalkPFF (844.825.5733)

Facebook.com/PulmonaryFibrosisFoundation

DR. JOSEPH LASKY / JOHN W. DEMING, MD CHAIR OF

info@pulmonaryfibrosis.org

University of Miami Miller School Twitter.com/PFFORG

of Medicine*

Linkedin.com/company/pulmonary-fibrosis-foundation

Instagram.com/PFFORG

BECOME A CARE CENTER NETWORK SITE

DENVER

MIAMI

New York-Presbyterian / Columbia

University of Michigan Health System

The application process to become a PFF Care

University Medical Center and

ANN ARBOR

Center Network site is now open.

New York-Presbyterian /Weill Cornell

University of Pennsylvania*

The PFF Care Center Network Selection Committee

Medical Center*

PHILADELPHIA

will consider applications for inclusion in the Network

NEW YORK

University of Pittsburgh

for facilities that meet the established guidelines for

Piedmont Healthcare*

Dorothy P. & Richard P. Simmons

patient care, teaching, and research, and that fulfill

ATLANTA

Center at UPMC

geographic and consumer need.

The University of Arizona Interstitial

PITTSBURGH

The selected sites will be announced during PFF

Lung Disease Program at the

Vanderbilt University Medical Center

Summit 2015 in November.

University of Arizona Medical Center –

NASHVILLE

University Campus in Tucson* TUCSON

The University of Kansas Hospital* KANSAS CITY

Tulane University School of Medicine*

For more information or questions, contact the

Washington University School of

PFF Patient Communication Center at 844.TalkPFF

Medicine in St. Louis*

(844.825.5733) or pcc @ pulmonaryfibrosis.org.

ST. LOUIS

Visit www.pulmonaryfibrosis.org/medical-community/

Yale School of Medicine

pff-care-center-network to apply.

NEW HAVEN

NEW ORLEANS

*Included in the PFF Care Center Network as of January 2015.

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PFF PROGRAMS

UPDATE

PFF Ambassador Program

Gains Momentum Sharing a personal story is an important way to make an impact. The national PFF Ambassador program,

PF Education Made Easy — PFF

Disease Education Webinar Series Looking for an easy way to educate yourself and others about pulmonary fibrosis ( PF)? The PFF Disease

Education Webinar Series is a versatile tool for support group meetings, family gatherings, or individuals to learn about the disease — the archived presentations are available any time you want them.

Offered monthly, webinars in the Series allow the PF community to learn from, connect with, and pose questions to leading PF specialists. Webcasts presented earlier this spring included “Occupational and Environmental Pulmonary Fibrosis” and “Pulmonary Hypertension and Pulmonary Fibrosis.” If you can’t attend the live presentations, past webinars are available to view 24/7 on the PFF website.

This year, all webinar topics were selected based on viewer surveys, which were conducted after the conclusion of each webinar during the 2014 series.

In addition to monthly presentations, a new, quarterly “Ask a Doc” webinar has been added to the Series which enables anyone to ask a member of the PFF medical team questions about living with the disease.

Visit www.pulmonaryfibrosis.org/webinars to access archived webinars, view the schedule for upcoming presentations, including “Ask a Doc,” and to register and submit questions.

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launched in July 2014, brings together IPF patients, caregivers, and health care professionals with expertise in pulmonary fibrosis (PF) to inform, engage, and support audiences across the country.

Each PFF Ambassador team includes one patient and/or caregiver and one health care professional.

At speaking engagements including fundraising events, support group gatherings, and meetings with health care organizations the Ambassador shares his or her personal story of living with pulmonary fibrosis, while the health care professional provides current information about the disease. Some Ambassadors whose oxygen needs have made it difficult to travel are even sharing their stories on radio programs (visit bit.ly/pffradiotour).

PFF Ambassadors were featured speakers at several spring events. PFF Ambassador Doug Jones spoke to a packed room at a Congressional briefing on February 25, 2015 in conjunction with Rare Disease Day. On the same day, Peter Mulliner shared his story with state legislators in Connecticut. Two local PF support groups welcomed Ambassadors to their meetings in March. The Naperville, IL support group welcomed Michele Peters and Cathy Brown, RN and the South Miami Hospital welcomed Emmanuelle Simonet, MA , CCRP. Both meetings were also attended by a member of the PFF staff to talk with support group members about the work of the PFF. To learn more about the PFF Ambassador program or to reserve a PFF Ambassador for your next support group meeting, education, or fundraising event, contact the PFF Patient Communication Center at 844.TalkPFF (844.825.5733) or pcc@pulmonaryfibrosis.org.

PFF Support Group Leader Network: Expanding its Reach When the PFF Patient Communication Center ( PCC) debuted in March 2014, it was hailed as a much-needed central information resource for pulmonary fibrosis (PF) patients, caregivers, family members, and health care providers. This dedicated call center provides the most up-to-date medical information, communicates the availability of support services, and provides information about other essential resources. The PCC also offers current information on available treatments and clinical trials.

In 2012 the PFF Support Group Leader Network (SGLN) was created to provide support group leaders with a forum to exchange ideas and discuss best practices. The SGLN has been especially valuable to individuals who may not have the knowledge, experience, or educational and financial resources to establish or host a support group.

Now, through generous funding in part from Boehringer Ingelheim, the PCC is helping to expand the SGLN by actively reaching out to areas without local PF support groups. Outreach efforts are already underway, with the PCC having identified high need areas as first points of contact.

“In person support groups are a real game changer when it comes to helping people live with pulmonary fibrosis — both patients and caregivers,” said Courtney Firak, Director of Programs.

“PCC outreach will help us more efficiently — and effectively — share PFF materials and resources that are essential to start and run these important groups within the PFF Support Group Leader Network.”

The grant will also allow the Pulmonary Fibrosis Foundation to offer additional training for support group leaders including presentations on topics such as “group dynamics” or “discussing a death in the group.”

The newly formed Support Group Leader Steering Committee is planning training webinars and developing a guide that will offer a year’s worth of topics, activity suggestions, and tips for finding speakers. “We’re making it as easy as possible to set up and run a support group,” Firak said.

As part of the support group expansion, the Leanne Storch Support Group Fund now offers expanded funding through two separate grants: • New Support Group Grant – $500 grant to establish a new pulmonary fibrosis support group • Support Group Development Grant – $750 grant to help an existing PF support group expand and extend its impact With the outreach activities of the PCC , “We’re building on existing programs and creating new groups thanks to new and expanded funding, which is critical to fulfilling the mission of the Foundation,” Firak said.

See page 24 for an update on the activities of the San Antonio PF Support Group, a Leanne Storch Support Group Fund awardee.

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JOIN US IN SEPTEMBER! What does “global” really mean for pulmonary fibrosis (PF) awareness?

WHO’S IN? Naftali Kaminski, MD (Yale School of Medicine Pulmonary, Critical Care and Sleep Medicine Section) and Kathleen O. Lindell, PhD, RN (Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at University of Pittsburgh Medical Center) at the International Colloquium on Lung and Airway Fibrosis meeting in Mont Tremblant, Canada (above).

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Global Pulmonary Fibrosis Awareness Month is a prime time for action and collaboration among all members of the PF community and beyond. Key participants are: • PF patients • PF caregivers • Family and friends of PF patients • Family and friends of patients who have passed away • PFF donors • PFF Support Group Leader Network • Team PFF event leaders • PFF volunteers • PFF social media community: Facebook, Twitter, Instagram • InspireSM – Online PFF Support Community • PFF Care Center Network • PFF Board of Directors • PFF Medical Advisory Board • PFF staff • PF advocacy organizations around the world • Respiratory and thoracic societies

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Global means a person doesn’t have to explain PF to his or her family and friends. It means primary care physicians recognize the signs and symptoms of PF. It means more research dollars go toward developing new treatments and a cure.

“Global” also means a widespread, shared commitment to eradicating this disease and improving the lives of PF patients. As the Pulmonary Fibrosis Foundation gears up for Global Pulmonary Fibrosis Awareness Month this September, we invite you to think about ways you can help spread the message about PF — to family, friends, health care professionals, colleagues, neighbors, leaders in your community, and everyone else in your circle. Global is allencompassing. Global includes you.

ONLINE TOOLBOX

www.globalPFawareness.org All Global Pulmonary Fibrosis Awareness Month activities can be found at www.globalPFawareness.org. Visit the website for: • Links to information about physician and patient educational events • Tools for PF community members to create their own grassroots awareness campaigns and fundraising events • Downloadable educational materials • PF community members’ stories and photos

In 2013 PFF Ambassador Diane Reichert (left) added a blue streak to her hair hoping the eye-catching color would help spread the word about pulmonary fibrosis.

Her efforts inspired others to participate in the “Blue It Up or Pay It Up” awareness and fundraising campaign.

THREE STEPS TO MAKING AN IMPACT ON PF LEARN: Increase your knowledge of PF by attending educational

events, reading educational materials at www.globalPFawareness.org, or viewing presentations in the PFF Disease Education Webinar Series at www.pulmonaryfibrosis.org/webinars.

SHARE: Pass along what you’ve learned so others can understand

the challenge and opportunity. Start a conversation by creating your own awareness campaign. Follow the PFF on social media and share Global stories.

FUNDRAISE: Host your own event and donate the proceeds to support the mission of the Pulmonary Fibrosis Foundation.

To purchase PFF lapel pins, PFF Breathe Bracelets, and other items to help raise awareness, please visit http://bitl.ly/shoppff.

PFF Ambassador Sally McLaughlin, RN, MSN (front, left) of the University of California, San Francisco ILD Program invited PF patients and their loved ones to attend a San Francisco Giants baseball game for Global Pulmonary Fibrosis Awareness Month 2014. Tickets to the event were generously donated by the Giants.

GET INVOLVED WITH TEAM PFF Start planning your own Global Pulmonary Fibrosis Awareness event now through Team PFF. We recently updated the Team PFF Event Leader Guide to make it even easier to hold an event to increase disease awareness and fundraise. To learn more, please contact Jennifer Bulandr, Director of Community Events and Social Media, at jennifer@pulmonaryfibrosis.org.

WAYS TO GET INVOLVED

• Host a luncheon or dinner • Create a FirstGiving page to share your story and hold a virtual fundraiser • Donate to the PFF in lieu of favors at your baby shower, wedding reception, bar mitzvah, etc.

• Ask your HR /Talent Director to hold a “Blue Jeans Day” at work and donate the proceeds • Hold a car wash in your community • Set up a lemonade stand with your children • Ask your workplace, school, or church to hold a charity/PF awareness day • Take up a collection in your neighborhood • Hold a bake sale and donate the proceeds to the PFF • Plan a bowling night with friends and family and ask them to make a donation • Host a direct sales party such as PartyLite® or Avon© and donate a percentage of sales To learn more about how PFF advocates are raising funds and awareness, see pages 18–21.

Mayor Rahm Emanuel proclaimed September 2014 Global Pulmonary Fibrosis Awareness Month in Chicago.

Mary Pat Slattery, dedicated PFF advocate, spearheaded the effort to acquire the proclamation.

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IN THE GREEN ROOM WITH JULIE HALSTON AND RALPH HOWARD Actor and comedian Julie Halston and her husband, radio anchorman Ralph Howard, have been the mainstays of the successful benefit show, Broadway Belts for PFF!, which is held every year at Birdland in New York City.

Ralph, a pulmonary fibrosis ( PF) patient, had a lung transplant. This year, Broadway Belts celebrated its 5th anniversary. In total, the event has raised more than $387,000.

Now that Broadway Belts has raised some awareness, what’s the next step?

Julie: People are now really becoming aware of what we do, and that’s important. But we want them to become super aware.

CHRIS OW YOUNG

$387,000

I have spoken with journalist and talk show host Meredith Vieira about this; she is aware of our story. It’s starting to get onto the radar, and the fact that these two new drugs have been approved by the FDA for use in the US has helped raise awareness.

We’re hoping that this becomes a national conversation.

How did Broadway Belts for PFF! come about?

Ralph: The drugs are a breakthrough, and it’s promising,

Julie: While Ralph was getting on the lung transplant list,

but there’s still not a cure. We have to keep on with the stuff

Michael Kuchwara, a friend of ours who was the Associated

that we’re already doing, which means transplants.

Press drama critic, passed away from pulmonary fibrosis.

Julie: The drugs can make people more comfortable, and

Ralph: He died of what was called a heart attack. We were

they can slow the progression of the disease. That’s what we’re

all shocked, and then found out later that really he had

all hoping, but that doesn’t mean you’re disease free. That’s

pulmonary fibrosis.

the thing about pulmonary fibrosis; it’s progressive and

Julie: So we got all these Broadway people to sing some

ultimately fatal.

of his favorite songs and we decided to do it as a fundraiser;

Ralph: But I’m one of the very lucky ones. I’ve come out of it

it was a one-time-only thing just to memorialize Michael.

healthier than a lot of other people have. I have a very good life.

It was so successful and such an amazing show that people

Julie: And he’s still adorable, he’s still very cute. I think he’s

said, “Well, why don’t we do it every year? And we’ll give the

cuter than ever, to be honest.

money we raise to the PFF.” And it’s now in its fifth year!

The ironies were staggering that someone we knew and cared

What advice do you have for others in the PF community?

about died from the same disease that Ralph had just been

Julie: When people are having trouble breathing, or they’re

diagnosed with. It was a very bittersweet and ironic

having any kind of issue with their lungs, they need to start

circumstance.

saying to their doctors, “I really want to be tested for pulmonary

How has the event grown and changed over the years?

fibrosis.” They need to start educating themselves about PF, and they need to start asking their doctors the questions about

Julie: We started small, but each year we have raised more

PF, and don’t take no for an answer. If you really feel strongly

and more money. The Broadway community (one of whom

about something, that your health is on the line, you need to

happens to be our business manager, Douglas C. Lane,

ask them these very specific questions.

who is also one of the most fantastic human beings on the planet!) and the other sponsors have been so generous.

Ralph: And people who have been diagnosed or suspect they may have PF need to go to these centers in the PFF Care

We’ve had Liza Minnelli, Joel Grey, Linda Lavin, and Tony

Center Network (CCN), or get in touch with these centers.

Danza. This year we’re going to have Annaleigh Ashford,

The Foundation is being very proactive—Julie and I are very

who is in my show You Can’t Take It With You and also on

excited about the new CCN centers.

the TV show Masters of Sex; and Randy Graff, a Tony Award-winning actress. We had Darlene Love the year she

To learn more about Broadway Belts for PFF!,

was inducted into the Rock and Roll Hall of Fame.

visit www.pulmonaryfibrosis.org/ways-to-give/

Ralph: And she blew the place apart! It was amazing.

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broadway-belts-for-pff.

A DRIVE TO HONOR HIS FATHER’S LEGACY

$200,000

Pete DeVito was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009 and passed away the following year. The Pulmonary

Fibrosis Foundation’s (PFF) Senior Medical Advisor, Education and Awareness, David J. Lederer, MD, MS, was his doctor. This year the DeVito Memorial Foundation, established in Pete’s memory, will host its 5th Annual Golf Outing & Dinner on June 12 at the

Willow Creek Golf and Country Club in Mount Sinai, NY. Since its inception five years ago, and with a fundraising goal of $50,000 for this year, the DeVito Foundation is on target to raise over $200,000 in support of the PFF. We interviewed Nick DeVito, Pete’s son, to find out how he has been able to create such a successful event.

Why did you choose to hold a golf outing?

What innovative and new things do you present each year to keep

Nick: My dad started playing golf a few years before he died.

the event fresh and increase attendance?

He loved it and was always trying to take my brothers and

Nick: I look at each part of the outing —day and evening —as a separate

me out on the course with him. We thought a golf outing

event. We have about 150 golfers and approximately 250 for dinner.

would be a fitting way to raise money for IPF research while

Almost all the golfers stay for dinner.

also honoring his memory.

During the day, we make sure everybody’s having fun on the course.

Who is involved in planning and executing the event?

How do you keep things running so seamlessly?

Nick: We have a committee —it’s a family effort led by my

What was a straightforward golf outing in the beginning now has a lot more going on. Representatives of local restaurants provide refreshments to

golfers as soon as they arrive at various locations on the golf course. We

also conduct different contests on the course —a chance to win a car with

mom, Susan; my brothers, Peter and Daniel; my wife and

a hole-in-one, a “beat the pro” competition, and a longest drive contest —

me; and my sisters-in-law. Some of our cousins and family

some of these are also mini-fundraisers. Every year, we’re changing and

friends also help out. Everybody plays an active role, some

expanding what we offer. Last year, every foursome received a picture of

coordinate the auction, others will work on getting sponsors

their group while they were on the course. This year, the winner of a driving

and golfers, and so on.

contest will win a trip, and early registrants will be entered into a drawing

What drives you to keep expanding the event each year?

Nick: We were concerned that we’d reach a point where people would lose interest and sponsorships would dwindle, but just the opposite has happened. At each outing, people

to win a free club membership for a year.

At the dinner in the evening, we change up the menu and make sure the auction includes special items like iPads and trips. This keeps the attendees interested and wanting to participate.

tell us, “I had a really great time, and I also know that

What’s your advice to someone who is interested in hosting

I’ve done something worthwhile.” So it feels like a double

a fundraising event but doesn’t know where to start?

accomplishment, people having fun while doing something that makes a difference.

Nick: First, know your audience and community. Who are you targeting to come to the event and who will help you do that? For example, my brothers, cousins, myself, and others work with our friends and business associates. Second, it is valuable to know who to ask for prizes and sponsorships, and know your price range. I think it’s important to know the community you’re working with and at what dollar value they’ll support you. And it’s important to offer options so businesses with a limited budget can participate, too.

What’s the best part about hosting your event?

Nick: Seeing the level of excitement from everybody, both on the course and at dinner. They’re having fun, but they’re also willing to spend an hour at dinner listening to our story and supporting our cause. This event is very personal to my family. We keep our focus on our twofold goal: to raise awareness and money for IPF, and to celebrate my dad’s legacy.

The guests tie both of those together.

For more information about the 5th Annual Pete DeVito Memorial Foundation Golf Outing, visit www.petedevitofoundation.org.

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SEPARATE FAMILY EXPERIENCES LEAD TO A SHARED COMMITMENT Married couple Colleen and Martin Attwell found a common bond in an unfortunate coincidence, both lost their fathers to pulmonary fibrosis (PF). Determined to help other families, the Attwells have become enthusiastic volunteers for the Pulmonary Fibrosis Foundation ( PFF), most recently hosting a successful dance party that raised almost $13,000 for PF research.

Please describe your families’ experience with PF.

What made you choose a dance party for your

Martin: My father died well before Colleen and I met. I’m

October 2014 fundraiser? What was the event like?

from the United Kingdom and came to the United States in

Colleen: Martin and I had been taking dance lessons

1993. My father became ill a few years after that, and died

at the Arthur Murray Dance Studio in Oakbrook Terrace,

in 1999 at age 61.

Illinois. We had the idea of renting out the studio —

Colleen: My father had already been diagnosed with PF when

Arthur Murray ended up donating the space, which

Martin and I were married in 2012, but he chose not to tell

was super-supportive of them —serving food and drink,

us until after our honeymoon. He passed away in 2013, when

and having studio teachers give group dance lessons.

he was 75. I hadn’t even realized exactly what Martin’s dad

Martin and I did a couple of demos, too. We’re country

died from; PF is not widely known and I didn’t put it together

music fans, and one number was a country routine

until my dad had it.

wearing boots and hats we’d bought on a trip to Nashville. We wanted a fun, private party for friends,

What made you want to get involved with the PFF and

family, and coworkers. Martin’s colleagues were

how has fundraising to support the Foundation’s mission

impressed with his dance skills —that’s not a role

been rewarding to you?

they’ve seen him in before!

Colleen: My entire career, more than 23 years, has been

Martin: It was a great event that let us bring together

with nonprofit organizations. So getting involved with the

people we know from different settings to share

PFF feels very natural to me. I’m a big proponent of medical

something unique and fun that was also a tribute to

research. You have to get involved and try to make it better

our fathers. Everyone participated in the dance lessons

for someone else. I don’t want anyone else to go through

and there was a lot of laughing. Both our mothers were

what my family did.

there—mine came all the way from England.

Martin: For a while, I’d been thinking I want to give back and was looking

Martin: For both of our dads, a lung transplant was

be fulfilling to me. When

discussed, but it was too late and they were too weak

Colleen’s dad got sick, I

to be good candidates. We know increasing awareness

thought, “This is that thing.”

of the disease can speed up the period from detection

PF is something to which

to diagnosis to looking at options.

and commitment. We’d

What’s the next activity you’re planning for the PFF ?

like to make inroads into

Colleen: We’re already thinking about what we’ll do next

treatments and help find

year. Including hosting the dance party, we raised funds

a cure, but there’s also

that totaled about $25,000 for our first year. We’ll

an element of giving back

definitely stay involved!

to society in general.

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to know about this disease?

for something that would

we both have a connection

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What’s the most important thing you’d like everyone

JUMPING IN TO MAKE A DIFFERENCE Larry Runyon has been living with idiopathic pulmonary fibrosis (IPF) since 2007.

His wife, Cheryl, gives Larry a sense of hope, and together they are a dedicated team of Pulmonary Fibrosis Foundation (PFF) advocates. With their generous contributions (including monthly pledge payments), time, and passion, the Runyons are a model of how to become fully engaged with the PF community.

Please tell us about your family’s experience with PF.

Why did you decide to pledge monthly?

Cheryl: We’d struggled for several years to find out what was

Cheryl: It’s easier for me with our budget. We know a certain amount is coming

going on with Larry before he was finally diagnosed with

out every month and going straight to the Foundation. I also save my change

pulmonary fibrosis (PF) in 2007. The diagnosis was a real

all year and donate it in December. And if we’ve got a little extra lying around,

shock. Like a lot of people, we’d never heard of PF. But I’m

I usually write a big check at the end of the year, too.

one of those people who go out and get information as a way of coping with things, and that helped.

Larry: Traveling to higher altitudes, I was struggling for oxygen and couldn’t understand why. My doctor started putting everything together and said you need to go in for a

You’ve been involved in many awareness and fundraising activities: staying active on the PFF’s Facebook and InspireSM pages, wearing t-shirts, writing letters to the editor during Global Pulmonary Fibrosis Awareness Month, and more. What motivates and inspires you to stay involved?

biopsy. Being told you have this disease and only, on average,

Larry: When it comes to donating, it’s not just the money; it’s the time. Cheryl

have three to five years ahead of you, you’re blown away.

has connected with so many people who’ve been blindsided by this disease. It’s an

It was a really tough road for me, going through the grieving

incredible community and Cheryl gives a lot of her heart in corresponding with so

process and trying to figure it all out. Cheryl’s been my

many people. And she really has made a difference in a lot of people’s lives. You

inspiration, dragging me, sometimes kicking and screaming,

get a lot from what you give. I’m so proud of what she’s done to advance awareness.

to where I needed to be.

Cheryl: Keeping the inspiration going is not hard to do. Between my husband and

I’d never planned to retire, but PF forced me to leave a job

all the wonderful people I’ve met, both patients and caregivers, that’s enough to

and change my entire life. It was an incredible adjustment.

keep anyone going. As soon as I found the PFF, I told my husband we need to start

I spent a lot of time saying that I’m dying from this disease.

donating, because even our little bit can help. My husband said, “If we don’t

Then Cheryl said, “Look at it from the point of view that

donate, we can’t very well ask others to donate.”

you’re living with PF.” That changed my thinking and made a big difference.

Now it’s been over seven years and I feel pretty good. When I stop going out to hit golf balls —which I still do using a golf cart and my oxygen —then you’ll know I’m in trouble.

Why is spreading disease awareness so important?

Cheryl: If you don’t increase awareness, nobody’s going

What is your advice to someone who wants to have an impact, but doesn’t know where to start?

Cheryl: Start with the PFF! I point people to your website, which is very easy to use. This is such an Internet world that I tell people to also get on the Facebook or go to the InspireSM page. There are so many ways to get involved, not just by giving money. I advise anyone just finding out about PF to look for ways to give and get support.

to know about PF. If nobody knows, no funds will be raised,

Larry: In addition to the people Cheryl has connected with online, I’ve met a

no more medications will be discovered, and no cure will be

number of local people with PF through my rehabilitation center. Just like me, they

found. When you’ve got a personal stake in something, you’ve

were stunned when they learned they had this disease. But I make arrangements

got to take it upon yourself to do it. This is out of my comfort

for lunches and take Cheryl along with me. She connects so well that she’s been

zone, but I’m passionate about wanting to get the word out,

able to get them to start thinking differently about PF.

for Larry, for a personal friend of ours who has PF, and for

Cheryl gives people a sense of hope and steers them in the right direction, so

everybody else who has it.

they can become knowledgeable enough to really get involved in their own care.

How did you first learn about the Foundation?

A lot of patients go to their doctors’ offices, sit there, listen, and leave. They don’t ask questions. I might have been one of those patients if I didn’t have Cheryl.

Cheryl: I learned about it surfing the web, looking for support.

I gravitated toward your group because it was so welcoming to me. I decided to put my focus on the PFF. BREATHE BULLETIN

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philanthropy SPOTLIGHT ON PHILANTHROPY

Giving Back and Raising Awareness In honor of their father, George Rattner, who passed away from pulmonary fibrosis (PF) in 2004, siblings Susan L. Rattner, MD, and Steven Rattner are active supporters of the Pulmonary Fibrosis Foundation (PFF). Susan is a member of the PFF’s Board of Directors and serves on the PFF Care Center Network review committee. The family recently made a very generous gift supporting the PFF Care Center Network (CCN) and the PFF Patient Registry.

Susan Rattner retired from a successful medical practice in Fairfax, Virginia, in 2002. Currently, she holds an associate appointment at Johns Hopkins Bloomberg School of Public Health in the Department of Health Policy and works as a consultant on various community initiatives. She also volunteers at the Arlington Free Clinic and other community health centers providing gynecological and breast examinations. Steven Rattner is Chairman of Willett Advisors LLC , the investment arm for former New York Mayor Michael R. Bloomberg’s personal and philanthropic assets. In addition, he serves as the Economic Analyst on MSNBC’s Morning Joe and is a contributing writer to The New York Times op-ed page. Previously, he served as counselor to the Secretary of the Treasury and led the Obama administration’s successful effort to restructure the automobile industry.

Please describe your experience with pulmonary fibrosis and how it has affected your family.

SUSAN: Our dad was diagnosed after having had a cough and shortness of breath for over a year. He’d been misdiagnosed with various things. He was finally correctly diagnosed in 1999, and he passed away from PF in 2004. I’m a physician but didn’t know anything about this disease, although I subsequently learned a lot about it. At that time there weren’t any treatments and very few options available.

STEVEN: We watched our dad suffer for five years. It was

a long time. When Dad first wasn’t feeling well, we didn’t know what it was. It’s a mysterious disease and he’d always been in perfect health; I don’t think he spent a day in the hospital before he got sick. It frustrated us, as I’m sure it has frustrated other families, not to know if it’s genetic or random or what.

How did you first learn about the PFF ?

STEVEN: Dad found it. As you would imagine, when you’re

told you have something for which there’s no cure and not much treatment, you do what you can to learn more. He spent a lot of time on the Internet and eventually found his way to the PFF. I think the PFF gave him a lot of comfort — I think he felt better knowing there were people who could talk him through the issues.

What is your advice to others who may be coping with the loss of a loved one from pulmonary fibrosis?

George Rattner surrounded by his grandchildren.

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SUSAN: For me, coping means doing what we’re doing, making other people aware of PF and trying our best to support the research and the people suffering from this horrible disease. Everybody deals with grief in their own way; for me, it’s trying to prevent somebody else from going through it. Because PF is not widely known, bringing awareness to people is the key.

Why is your PF advocacy and philanthropic work important to you?

GIVING OPTIONS

STEVEN: I think those of us who have been fortunate to have either the

Donations to the PFF are critical for us to maintain

means or the time to give back, have an obligation to do that. That’s the way we were brought up, the way we’ve always thought of our lives.

There’s a very personal element to this that’s very motivating whether you’re talking about time or money. I’ve always said to people “You can get involved and support whatever organization or cause you want in whatever form you want, but you should do something.” I have a lot of things I try to help with in one form or another, but this one is probably the most personal.

our momentum in serving the PF community.

Susan, tell us about your work with the PFF, most recently with the Board of Directors.

Your donations enhance patient support services, increase research funding, and broaden disease education outreach. Please consider supporting the mission of the PFF.

MAKE A DONATION Online Visit www.pulmonaryfibrosis.org/donate

By Mail Use the donation envelope in this issue

By Phone Call us at 888.733.6741

SUSAN: In the beginning, I was peripherally involved. It was a much

PLAN A TEAM PFF FUNDRAISING EVENT

smaller Foundation, just finding its way in the nonprofit world, but it has subsequently grown into a much more effective, well-managed nonprofit.

Serving on the Board has been an enjoyable experience. I’ve enjoyed watching the PFF grow and accomplish things like the CCN, where patients can get all the services and support they need. Our dad had to find those things on a piecemeal basis. I’m not so sure he would have gone to support groups, but it would have been nice to have the option!

Team PFF Event Leaders are individuals who

You have made a very generous commitment to support the CCN and Registry with a gift of $700,000 —why is the success of this endeavor so important to you and to the PF community?

STEVEN: While we weren’t happy about the circumstances under which

it occurred, we were fortunate to receive some of our dad’s generosity when he passed away. Instead of keeping if for ourselves, we wanted to use that money to address the disease that took his life.

SUSAN: The average general practitioner is probably totally unaware of

this disease. We need to educate the medical world and we need more research. More people die from this disease than from many cancers and there’s no cure and just two drugs approved for treatment in the US. Most times, we don’t even know actual figures of PF mortality because it’s often not listed on the death certificate. It’s usually idiopathic, so we don’t know what caused it, and there’s some hereditary component that no one’s been able to pinpoint yet. All these things need to be tracked, figured out, and worked out. To do that, we need both the CCN sites and the PFF Patient Registry, where everyone can get what they need under one roof.

They work side by side.

What should everyone know about the disease?

have created fundraising events to honor a friend or a loved one. To learn more about Team PFF , visit www.pulmonaryfibrosis.org/teampff.

PLANNED GIVING Please think about including the Pulmonary Fibrosis Foundation in your estate plan and leave a legacy that will live on in the PF community.

To get started, contact your financial advisor or the PFF’s President and COO, Patti Tuomey, at 888.733.6741.

PLEDGE PFF! Pledge PFF! is our monthly giving program, and an important source of revenue for the Foundation.

Our generous monthly donors provide stability and support to our important programs. To learn more about how you can maximize your impact, visit us at www.pulmonaryfibrosis.org/pledgefaqs.

EMPLOYER MATCHING GIFTS Please consider maximizing your donation through an employer matching gift program. To find out whether your employer will match your gifts, visit www.pulmonaryfibrosis.org/employermatch.

Your contribution today will have a positive and lasting impact on the PF community.

SUSAN: It’s a terrible, terrible disease — we know some risk factors but

The Pulmonary Fibrosis Foundation thanks you

don’t really know why some people are affected. It’s the only disease that’s touched our family in such a way. PF hasn’t gotten the attention it should have, and the amount of money poured into research compared to other diseases is miniscule. I’m honored and proud to be part of the Foundation that’s trying to change that.

for your generosity and support.

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advocacy EMPOWERING PEOPLE LIVING WITH PF

Leanne Storch Support Group Fund Supports Free Clinic… and More A little support makes a big difference in the lives of people with pulmonary fibrosis (PF). The Pulmonary Fibrosis Foundation’s ( PFF) Leanne Storch Support Group Fund awards grants that can be utilized to host educational events, start a new group, or fund other related

The San Antonio Pulmonary Fibrosis Support Group received one of these grants for its second “Free SemiAnnual PF Clinic,” held in November 2014. The PFF spoke with the two “powerhouses” behind the San Antonio PF Support Group: Dorothy “Dot” Delarosa, a PF patient and lung transplant recipient, and Anoop Nambiar, MD, Assistant Professor and Staff Physician at the University of Texas (UT) Health Science Center and Staff Physician at the South Texas Veterans Healthcare System’s Audie L. Murphy Memorial Veterans Hospital.

DOT: In order to get listed for a transplant, I’d needed to raise $26,000 for the testing. My mom had given me a Mustang convertible that I couldn’t use because I was so sick, and we came up with the idea of raffling it off at $100 a ticket. A month later, we’d sold 200 tickets!

The first person to give me a raffle donation was a man I’d only met once, and he gave me a $1,000 donation. The winning ticket at the raffle happened to be his! I called to tell him, and he said, “Dot, let’s talk about it. You’re going to need a car when you get better, and I already have a car.”

So he gave me back my car. It was so generous, and it helped give me a tangible symbol that I was going to get better.

Dot, please describe your experience with PF.

Dr. Nambiar, what is your background in PF ?

DOT: It started with a dry cough. I was misdiagnosed

DR. NAMBIAR: I did my pulmonary training at the University of Michigan, finishing my fellowship in 2009.

While there, I got to participate in some research with Fernando Martinez, MD, and Kevin Flaherty, MD, two of the world’s experts on PF. That sparked my interest, but I wasn’t sure yet that I wanted to do this as a career.

I spent a year at the southern tip of New Zealand, where I was the only lung specialist, and that experience made me realize I had an affinity for teaching patients, families, and others. So, when I came back to the US in 2010, I found a great opportunity with the UT Health Science Center. It’s a fairly small academic program, but one with experts in every major field in pulmonology. I came to fill the program gap in fibrotic lung disease.

I’m now getting a lot more referrals and complex cases, and we’ve learned the only way to establish a reliable diagnosis is through multidisciplinary collaboration. We’re putting the pieces together to give patients comprehensive care. Dot got her transplant through our program, and she’s received exceptional care.

support group activities.

with asthma and given inhalers and prednisone, which didn’t help. Eventually I went to a pulmonologist who suspected I had idiopathic pulmonary fibrosis (IPF) and told me to go straight to the hospital. Of course I thought he was crazy, but I was in the hospital for 26 days. That’s when I first heard the first word “transplant.”

Two years later, in 2010, I got my transplant. I was only 40, unusually young for IPF, but I was in a wheelchair and on oxygen 24/7. I got the call for the transplant and my life has never been the same. I was born in 1967 and my transplant date was June 7. I call it my second birth.

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Your journey to your transplant wasn’t a smooth one, but you had some help along the way. Tell us about what happened.

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How did both of you get involved with the San Antonio Pulmonary Fibrosis Support Group?

DOT: When I got diagnosed, I wanted to meet other people I could talk to — people I could see, not just communicate with online. The closest support group was in Houston, 200 miles away. So I started one in San Antonio in 2009. We’ve had about 20–30 members over the years.

DR. NAMBIAR: After I came to San Antonio in 2011, I started an academic clinic for IPF patients at UT, but realized I wanted to have more direct exposure to patients and their families. I found the support group online, gave Dot a call in 2012, and here we are.

You created the “Free Semi-Annual PF Clinic”— an event that helps people tremendously. Please describe it and how this idea evolved.

We wanted to fund a free clinic event through our support group, and tried it out for the first time in May 2014, then again in November. It’s an amazing event that addresses the tremendous lack of awareness and understanding of the disease — not just for patients and families, but also for community physicians, because that’s often where patients go first.

Our idea was that it would help patients without insurance, but that turned out to be less of an issue than we’d expected. Four of the five patients who came to the first clinic had very good insurance, but they wanted a second opinion. Their pulmonologists hadn’t been sure of their diagnoses and these patients were asking, “What do I have, how bad is it, and what can I do about it?” So although the focus on it being a free clinic was and is important, it’s become more of an informational event.

We ask patients to bring their records to the clinic.

I review them and give a “curbside consult,” making sure they know it doesn’t replace a formal consultation. We then refer people to the UT Health Science Center where they’re doing some exciting things in clinical trials.

DR. NAMBIAR:

DOT: For our February 2015 clinic, the PFF was nice

enough to donate some posters and other disease education materials. We make the most of everything we get!

How important is an accurate diagnosis for PF patients? How often do you see patients in the clinic who have been misdiagnosed?

DR. NAMBIAR: Even with awareness growing, I think misdiagnosis

is extremely common. I’d ballpark it at 50% — and it’s not just IPF, but all fibrotic lung disease, that often doesn’t get recognized or is misdiagnosed. It’s not that community doctors don’t care about IPF; it’s that it’s a rare disease. In their whole clinical practice they might see one or two cases a year. They therefore might not be aware of what they need to do. We’re trying to raise awareness.

To give you an example, of the five patients we saw last year at the first free clinic, four were diagnosed with IPF, but only two turned out to have it. It’s wonderful that we have the two new treatments approved in the US for IPF patients, but they haven’t been shown to work in non-IPF fibrotic lung disease patients. So it’s important that these new therapies are used in appropriately selected, correctly diagnosed patients.

How has the Leanne Storch Support Group Fund allowed you to expand the activities of your support group?

DR. NAMBIAR: For our monthly or bimonthly meetings, I give a PowerPoint presentation on an IPF topic. I used to make a presentation and give attendees a handout of the slides, but the handout wouldn’t have color or animation. The award got us a portable projector so that I can give a true presentation to patients and families at the meetings.

It’s made a big difference, the presentation is more engaging and has much more impact.

DOT: Whatever awards or donations we get, we want to use for

equipment for the free clinic. We hope to use some of our 2014 award towards doing spirometry [test that measures lung function] or walk testing equipment for the free clinic.

I have to say Dr. Nambiar really has my heart for what he’s done with us. The first day we met, I said I had to visit a sick friend and he said, “I’ll go with you.” He went to visit a patient he’d never met, and I realized right away that he has a heart for the people. Our support group is a beautiful team — and I know it’s just the beginning.

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research PUTTING YOUR DOLLARS TO WORK

PFF Research Awards Help Investigators Make New Inroads into Understanding PF THE PULMONARY FIBROSIS FOUNDATION (PFF) directly funds

research, promotes advocacy and fund-raising efforts, and assists in developing collaboration between industry and academic researchers.

The PFF Research Fund directly supports research through the I.M. Rosenzweig Junior Investigator Awards, which helps advance the research of junior scientists, and the Albert Rose Established Investigator Awards, which funds established investigators.

These awards support research projects that offer a high likelihood of improving the understanding and treatment of PF in the areas of basic science, translational, clinical medicine, and/or social science/ quality of life research. Two $50,000 awards in each of the two categories are granted annually.

PFF GRANT HELPS INVESTIGATOR OBTAIN MAJOR NIH FUNDING

Dr. Hagood’s PFF supported research helped him obtain a $1.8 million grant from the National Institutes of Health (NIH) in 2014.

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Scientists have long known that the cells in our body communicate with each other. Each cell releases proteins that can signal nearby cells to reproduce, travel closer, shut down, or even die.

Funded by an Albert Rose Established Investigator Award in 2012, Dr. James Hagood has found that the cells (fibroblasts) that make scar tissue in the lungs bundle these proteins into a package (called a “vesicle”) that is delivered only to other specific types of cells in the lungs. Some of the proteins inside of these packages can contribute to scarring in the lungs. One day, drugs that block these proteins may be beneficial to treat or prevent PF.

Dr. Hagood’s PFF supported research helped him obtain a $1.8 million grant from the National Institutes of Health (NIH) in 2014 to continue his research into the role of these packaged proteins in PF. Dr. Hagood is a pediatric pulmonologist and Chief of the Division of Pediatric Respiratory Medicine at the University of California, San Diego and the Rady Children’s Hospital – San Diego.

His lab has studied PF for nearly 20 years with a focus on mechanisms by which fibroblasts, the cells responsible for the formation of scar tissue, become abnormally activated. His lab has shown that Thy-1, a natural fibrosis suppressor gene, becomes silenced in PF fibroblasts. Dr. Hagood’s lab was the first to describe epigenetic alterations (acquired changes that don’t alter DNA sequences but cause them to behave differently) in PF.

INSIGHTS INTO TELOMERES’ CONTRIBUTION TO IPF Dr. Rosen has been on the faculty of the Stanford University School of Medicine since 1993 and was an Associate Professor of Medicine in the Division of Pulmonary and Critical Care Medicine. Dr. Rosen’s laboratory research focused on translational studies in PF; specifically, his laboratory studied mechanisms involved in the pathogenesis of pulmonary fibrosis and the development of novel treatments for fibrotic lung disease. His more recent work involved the novel functions of telomerase and the genetics of PF. Dr. Rosen is presently Medical Director, Exploratory Clinical and Translational Research (ECTR), Fibrosis, at Bristol-Meyers Squibb, New Brunswick, NJ.

©iSTOCK.COM / TTSZ

Telomeres are strands of DNA at the ends of chromosomes that safeguard chromosomes and keep them healthy.

Scientists think telomeres help to protect individuals from disease and can slow the aging process. In fact, as people age, telomeres become shorter. Short telomeres may not be able to keep chromosomes healthy and might predispose people to disease.

In 2007, scientists found that some people with idiopathic pulmonary fibrosis (IPF) had shorter telomeres, and that the genes that help maintain telomeres at a healthy length were abnormal. Until recently, it hasn’t been clear why short telomeres might lead to IPF. Funded by an Albert Rose Established Investigator Award that he received in 2012, Dr. Glenn Rosen has discovered that one of the genes responsible for maintaining telomere length helps to protect the air sacs of the lung from oxidative stress, which has long been known to contribute to lung injury and fibrosis.

Although trials of antioxidants, such as N-acetylcysteine (NAC), have not been shown to be beneficial in IPF, Dr. Rosen’s work suggests further research in this area may yield important insights about the day-to-day factors that contribute to lung injury and scarring.

PROTEIN INTERACTIONS MAY LEAD TO LUNG SCARRING One of the problems in PF is that there are too many cells making scar tissue in the lungs. According to Dr. Haiteo (Mark) Ji, these cells (called “fibroblasts”) seem to reproduce in part due to interactions between two proteins: Beta Catenin and T-Cell Factor.

Funded by an I.M. Rosensweig Junior Investigator Award in 2012, Dr. Ji developed a high-throughput system to identify four molecules that prevent the Beta Catenin and T-Cell Factor proteins from causing lung cells to reproduce. This exciting work is continuing and will hopefully lead to a phase 1 clinical trial of one of these molecules in the future.

Dr. Ji is an Assistant Professor of Chemistry and Assistant Professor in the Center for Cell and Genome Science, University of Utah. A native of China, he received his PhD and BS degrees at the Second Military

Medical University of China. As a postdoctoral fellow at Northwestern University under Professor Richard Silverman, he proposed a new concept, minimal pharmacophoric element and developed a new method for fragment-based inhibitor design, called fragment hopping. By using this new strategy Dr. Ji discovered the most potent and dual selective nNOS inhibitor reported to date. Dr. Ji’s independent research interests are largely dedicated to the structurebased design and synthesis of small molecules to modulate cellular signaling pathways that are critical in pulmonary fibrogenesis. In the process of designing and synthesizing new small-molecule inhibitors, he also aims to develop novel and widely applicable techniques for future drug discovery.

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TURNING TALENTS TOWARD A PULMONARY FIBROSIS CURE Fifth Annual Broadway Belts for PFF! is a Sold-out Success Lifting their voices to raise money in the fight against pulmonary fibrosis ( PF), some of Broadway’s finest appeared at New York’s Birdland Jazz Club on February 23 for the fifth

KEVIN ALVEY

annual Broadway Belts for PFF! Award-winning actress and dedicated Pulmonary Fibrosis Foundation (PFF) advocate Julie Halston hosted the sold-out event, which brought together some of Broadway’s best vocal talent for a night of spectacular entertainment.

The event raised more than $150,000 to benefit the PFF. “We are incredibly grateful to our dear friend Julie Halston and all the others who worked so hard to make this event a success,” said Patti Tuomey, the Foundation’s President and Chief Operating Officer. “The show always features such amazing talent and in five years, has contributed more than $387,000. It’s this type of dedication and effort from the PF community that will help us fund research to find a cure.”

This year’s stars presented an intimate evening of melody under the musical direction of Christopher McGovern and returning director Carl Andress, who has directed all five performances of Broadway Belts for PFF! The star-studded cast included Santino Fontana (Cinderella ), Julia Murney (Wicked ), Tony Award-winner Randy Graff (City of Angels), Annaleigh Ashford (Kinky Boots, You Can’t Take It With You ), Erich Bergen (Jersey Boys film, TV’s Madam Secretary ), Robert Creighton (The Mystery of Edwin Drood ), Zakiya Young (Stick Fly, The Little Mermaid ) and Betsy Wolfe (Bullets Over Broadway, The Mystery of Edwin Drood ). Ms. Halston hosted the program for the fifth straight year with her typical, incomparable humor and heartfelt comments. Most recently she has appeared in the Broadway hit You Can’t Take it With You.

Julie Halston

save the date

Broadway Belts 2016 Monday, February 29

Santino Fontana

Randy Graff Zakiya Young

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PHOTOS BY MIKE SHEEHAN UNLESS OTHERWISE NOTED

Broadway Belts for PFF! began in 2011 as an evening to honor the beloved Associated Press theater critic Michael Kuchwara. In May 2010, Mr. Kuchwara passed away from idiopathic pulmonary fibrosis (IPF).

Ms. Halston, a friend of Mr. Kuchwara, became a leading spokesperson for the PFF after her husband, broadcaster Ralph Howard, received a lung transplant as a result of his IPF shortly after Mr. Kuchwara’s passing. (Read more about Julie Halston’s and Ralph Howard’s experiences with IPF and the PFF on page 18.)

“I want everyone to know about the Pulmonary Fibrosis Foundation so that no one with this terrible disease has to go through it alone,” Ms. Halston said.

“My husband and I started this benefit five years ago to remember our friend Michael, and we hope the awareness and money raised brings us closer to a cure.”

The PFF thanks the 2015 Broadway Belts for PFF! sponsors.

PRESENTING

Doug and Gay Lane Charitable Foundation Genentech The Steffy Family Foundation Fund DIRECTOR’S CIRCLE

Daryl and Steven Roth Foundation J. Todd Tullis in memory of Kathy Tullis Erwin & Isabelle Ziegelman Foundation BROADWAY PARTNER

Broadway Cares/Equity Fights AIDS Robert and Patricia Ross on Behalf of FARE ENSEMBLE MEMBER

Nederlander Organization CHORUS LINE

Jennifer A. Galvin, MD Steve and Bev Hossa IPF Patients PNW Michelle Harmon-Madsen and Ken Madsen Bruce T. Sloane Mary Halston and Bruce Sternemann For a full list of sponsors Ralph Howard

visit bit.ly/broadway2015sponsors.

“We are incredibly grateful to our dear friend Julie Halston and all the others who worked so hard to make this event a success.”

PATTI TUOMEY, EDD / PFF PRESIDENT AND CHIEF OPERATING OFFICER

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2015 CALENDAR

View a current list of events at www.pulmonaryfibrosis.org/get-involved/attend-an-event

PF COMMUNITY EVENTS MAY 15–20

•

PFF

@ ATS 2015

JULY 27–30

•

Vermont Stem Cell Conference

OCTOBER 5–11

•

World IPF Week

International Conference

University of Vermont College of Medicine

AMA Fuori dal Buio

American Thoracic Society

BURLINGTON, VERMONT

WORLDWIDE

DENVER, COLORADO

PFF

@ Scleroderma Foundation

SEPTEMBER

•

Global Pulmonary Fibrosis

OCTOBER 24

•

PFF

@ CHEST 2015

Awareness Month 2015

American College of Chest Physicians

2015 National Patient Education Conference

Pulmonary Fibrosis Foundation

MONTREAL, CANADA

NASHVILLE, TENNESSEE

WORLDWIDE

JULY 17

•

SEPTEMBER 26 –30

NOVEMBER 12–14 •

PFF

@

ERS Annual

•

PFF Summit 2015:

From Bench to Bedside

Congress Amsterdam 2015

Pulmonary Fibrosis Foundation

AMSTERDAM, NETHERLANDS

WASHINGTON, DC

TEAM PFF EVENTS MAY 10

•

Eugene Marathon

EUGENE, OREGON MAY 25

•

Bridgnorth Walk

BRIDGNORTH, ENGLAND JUNE 7

•

8th Annual Greg Chandler & Guy F.

JUNE 13

Rock-N-Roll Half-Marathon

•

SEATTLE, WASHINGTON JUNE 21

•

Mammoth Lakes Half Marathon

MAMMOTH LAKES, CALIFORNIA JUNE 27

•

9th Annual BAF Memorial Bike

Solimano Memorial Golf Tournament

Run/Picnic

WEBSTER, NEW YORK

WEST MIFFLIN, PENNSYLVANIA

JUNE 12

•

5th Annual Pete DeVito Memorial

Foundation Golf Outing MT. SINAI, NEW YORK

JULY 1

•

No Tap Bowling Tournament

FULLERTON, CALIFORNIA

AUGUST 1

•

Katherine A. Kraus Breathe

for Life Memorial 5K Run/Walk DOVER, NEW HAMPSHIRE AUGUST 28

•

Luca Laurenza 5K Walk for

Pulmonary Fibrosis NEW CASTLE, PENNSYLVANIA SEPTEMBER 27

•

Ironman Chattanooga

CHATTANOOGA, TENNESSEE OCTOBER 3

•

Pinkie Run/Walk in Memory

of Merion Valentine Adams SPRING, TEXAS

JOIN US ON SOCIAL MEDIA

FOLLOW THE PFF ON FACEBOOK, TWITTER AND INSTAGRAM.

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PFF TEAM OFFICERS

BOARD MEMBERS

MEDICAL ADVISORY BOARD

Daniel M. Rose, MD

Michael C. Henderson*

Jesse Roman, MD*

Patti Tuomey, EdD

CHAIRMAN

CHAIRMAN

PRESIDENT AND CHIEF OPERATING OFFICER

Carl Salzano*

Kevin K. Brown, MD

Scott Staszak

VICE CHAIRMAN

PAST CHAIRMAN

CHIEF FINANCIAL OFFICER AND ASSOCIATE

Joseph Borus, Esq.*

Marvin I. Schwarz, MD

VICE PRESIDENT, INFORMATION TECHNOLOGY

SECRETARY

PAST CHAIRMAN

Gregory P. Cosgrove, MD

Dave Steffy*

Andrew H. Limper, MD

CHIEF MEDICAL OFFICER

TREASURER

CHAIRMAN, RESEARCH ADVISORY COMMITTEE

SENIOR STAFF

Daniel M. Rose, MD* CHIEF EXECUTIVE OFFICER

Luca Richeldi, MD, PhD*

Patti Tuomey, EdD

INTERNATIONAL WORKING GROUP

PRESIDENT AND CHIEF

CHAIRMAN

OPERATING OFFICER

Jeffrey J. Swigris, DO, MS*

Kevin K. Brown, MD

EDUCATION WORKING GROUP

Jennifer A. Galvin, MD Thomas E. Hales Kathleen O. Lindell, PhD, RN Susan L. Rattner, MD Stephen A. Wald, PhD

*EXECUTIVE COMMITTEE

CHAIRMAN

Timothy S. Blackwell, MD*

PATIENT COMMUNICATIONS

Harold R. Collard, MD SENIOR MEDICAL ADVISOR

CONTROLLER

Christine Kim Garcia, MD, PhD Andreas Günther, MD* Susan S. Jacobs, RN, MS

Michelle Michael VICE PRESIDENT, MARKETING AND COMMUNICATIONS

Michelle Clayton

Naftali Kaminski, MD*

INTERIM VICE PRESIDENT,

David W. Kamp, MD*

DEVELOPMENT

Zoë D. Bubany VICE PRESIDENT, BOARD AND EXTERNAL RELATIONS

Rex Edwards

James E. Loyd, MD*

ASSOCIATE VICE PRESIDENT,

David Lynch, MD*

PFF PATIENT REGISTRY

Ralph J. Panos, MD Ganesh Raghu, MD David A. Schwartz, MD*

accredited charity.

SENIOR MEDICAL ADVISOR,

Aryeh Fischer, MD

Imre Noth, MD

and is a Better Business Bureau

David J. Lederer, MD, MS

Kerrie Trebonsky

Fernando J. Martinez, MD, MS*

has a four-star rating from Charity Navigator

CENTER NETWORK AND PFF PATIENT REGISTRY

CHAIR, RESEARCH ADVISORY FORUM

Kathleen O. Lindell, PhD, RN*

The Pulmonary Fibrosis Foundation

STEERING COMMITTEE CHAIRMAN, PFF CARE

Rany Condos, MD

Joseph Lasky, MD*

give.org

Kevin R. Flaherty, MD, MS

Jeffrey T. Chapman, MD

Martin Kolb, MD

ACCREDITED CHARITY

CHIEF EXECUTIVE OFFICER

Moisés Selman, MD Patricia J. Sime, MD* Charlie Strange III, MD* Andrew Tager, MD Janet Talbert, MS, CGC Eric White, MD

*RESEARCH ADVISORY COMMITTEE

Jeri Webb ASSOCIATE VICE PRESIDENT, EXTERNAL RELATIONS

STAFF

Sarah Allabastro Patrick Belics Jennifer Bulandr Daeshawna Cook Mayra Diaz Eirill Falck Courtney Firak Sammantha Marks Jennifer Mefford Amanda B. Miller Angela Perillo Anil Pirbhai Andrea Smith

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register now!

NOVEMBER 12–14, 2015

WASHINGTON DC

SPONSORSHIPS NOW AVAILABLE.

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VISIT OUR ATS BOOTH #224 AND LET US SCAN YOUR BADGE FOR A CHANCE TO RECEIVE A COMPLIMENTARY REGISTRATION TO PFF SUMMIT 2015.

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