Breathe Bulletin Fall 2015 by Pulmonary Fibrosis Foundation

in this issue BREATHE BULLETIN VOLUME 15

| ISSUE 02

FALL 2015

SPECIAL INTEREST PFF PROGRAMS UPDATE 04 Support Groups: New Directions, Greater Outreach 07 Webinar Series Explores Variety of Topics 08 A Personal Spin on Pulmonary Fibrosis 10 Your Comprehensive Source of PF Information

PFF SUMMIT 2015 11

Join us for the PFF Summit 2015

12 Program / Faculty 13

Poster Presentation

REGULAR FEATURES COMMUNITY ENGAGEMENT 14

Global Pulmonary Fibrosis Awareness Month

17 Team PFF 22

Spotlight on Philanthropy

RESEARCH 24

PFF Care Center Network and PFF Patient Registry + Research Advisory Forum

Research Snapshots + ATS Conference Roundup

Research Awards

PFF NEWS 29

Broadway Belts

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.

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. ÂŠ 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.

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.

LETTER FROM OUR PRESIDENT AND CEO DEAR FRIENDS, The strides the pulmonary fibrosis (PF) community has made in the last year are cause for celebration.

The Pulmonary Fibrosis Foundation (PFF) has had an extraordinary year in programmatic development, providing a suite of signature programs that benefits patients, caregivers, and health care professionals. In 2014, we established several groundbreaking programs: the PFF Patient Communication Center, a one-stop shop for information about PF and the Foundation; the PFF Ambassador program, a personal and dynamic way to provide greater understanding of the disease and support to those living with PF ; and the PFF Disease Education Webinar Series, which helps groups and individuals learn more about aspects of living with PF. A year in, these programs are off to a solid and successful start. Our recent expansion of the Support Group Leader Network, for instance, allows us to broaden our reach while helping new and seasoned support group leaders conduct informative and inspirational meetings. This fall, we had a very successful Global Pulmonary Awareness Month celebration. Team PFF members ran, bowled, tweeted, painted, and golfed to support the mission of the Foundation. From dyeing their hair blue for #BlueUp4PF to sporting PFF Breathe Bracelets to sharing selfies of “PF Warriors” on social media, our enthusiastic participants reached new heights in raising awareness and funds for PF, and for that I am extremely grateful. I’m honored to have stepped into the role of the Foundation’s new Chief Executive Officer as Dr. Daniel M. Rose transitions to the role of Senior Advisor for the PFF. He remains an active member of the PFF Board of Directors. Dr. Rose has been a visionary leader for the PFF and laid a strong footing for the continuation of the vital work we’re doing to eradicate this deadly disease. It’s a privilege to follow in his footsteps as we take the Foundation and the fight against PF to the next level.

I hope you’ll help us keep the momentum going, building on the big programmatic expansion of the last year and the energy you displayed during Global Pulmonary Fibrosis Awareness Month. Join us November 12–14 in Washington, DC , for PFF Summit 2015 : From Bench to Bedside. We’ve added new topics, providing patients and caregivers with their own breakout sessions in addition to sessions with health care professionals, and even more opportunities to network. Please remember the Pulmonary Fibrosis Foundation on Giving Tuesday, December 1. On this day dedicated to giving back, people around the world come together for a common purpose: to celebrate generosity and to give. I know from the work we’ve all shared — especially the achievements we’ve made this past year — that we’re stronger together. Thank you for your continuing connections and commitment to the Pulmonary Fibrosis Foundation and to everyone affected by PF.

PATTI TUOMEY, EdD PRESIDENT AND CHIEF EXECUTIVE OFFICER

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programs PFF PROGRAMS UPDATE

SUPPORT GROUP LEADER NETWORK New Directions, Greater Outreach With the recently announced expansion of resources for the Support Group Leader Network (SGLN), the Pulmonary Fibrosis Foundation (PFF) is able to offer additional and larger grants to those seeking to establish a support group or expand services for an existing support group. In addition, support group leaders in the Network have gained access to new training and resource materials, as well as best-practice guidelines that enable them to maximize the impact of meetings.

STEERING COMMITTEE MEMBERS CAROL BAIR, RCP CINDI BRANNUM GARY CUNNINGHAM ANNE DIMMOCK SUSAN S. JACOBS, RN, MS* SALLY MCLAUGHLIN, RN, MSN* MICHELE PETERS LYNNE PUGLISE DAVID SHERRY* MYRNA TAYLOR *CO-CHAIRS

“The PFF strongly believes that participating in a support group has a positive impact on the health and emotional well-being for both individuals and families living with pulmonary fibrosis (PF),” says Patti Tuomey, President and Chief Executive Officer of the PFF. “We look forward to offering additional funding to members of the PF community who want to start new support groups, as well as further assisting established groups so that they will be able to offer more programs.” Since its inception in 2012, the Leanne Storch Support Group Fund has provided assistance to numerous support groups around the country. The grants have been used to sponsor Global Pulmonary Fibrosis Awareness Month activities and fund educational events like the free, semiannual PF clinic in San Antonio. These initiatives can increase disease awareness and allow patients, families, and physicians in local communities to learn more about this illness. The PFF Support Group Leader Network offers training and resources to support group leaders, as well as provides a forum for leaders to exchange ideas and discuss best practices. Three new SGLN Steering Committee chairs, Susan Jacobs, Sally McLaughlin, and David Sherry, are each leading a work group that will build on the SGLN’s solid foundation to make the Network even more effective.

THE EXPANSION OF THE PFF SUPPORT GROUP LEADER NETWORK RESOURCES IS MADE POSSIBLE IN PART THROUGH GENEROUS FUNDING FROM BOEHRINGER INGELHEIM.

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HOW DOES A SUPPORT GROUP HELP? COUNT THE WAYS “There’s a huge body of research on the benefits of support groups in general, and that’s certainly true of pulmonary fibrosis (PF) support groups,” says Sally McLaughlin, RN, MSN, who started the support group of the Interstitial Lung Disease Program at the University of California at San Francisco. Some of the benefits of support groups include: • Learning more about your condition and treatment than you can discover

Webinars to Share Tips on Starting, Maintaining Support Groups SUSAN S. JACOBS RN, MS (pictured above, left),

of the Center for Advanced Lung Disease, Pulmonary and Critical Care Medicine, Stanford University Medical Center, heads the Steering Committee working group on training webinars. “We’re working on a three-part series on starting and running a support group,” explains Jacobs, who leads the support group at Stanford’s interstitial lung disease clinic. “A lot of patients and caregivers don’t have access to a hospital or medical center that has a support group. They’re looking for guidelines and resources for getting one started.” The first webinar will discuss available resources for starting a group: resources for curriculum, funding, group dynamics, leading a discussion, choosing topics and speakers, and more. The second installment covers running a group, including troubleshooting logistics like choosing a setting and arranging for oxygen. The third webinar will be focused on helping seasoned support group leaders keep their groups lively and growing. The three webinars are scheduled for rollout before the end of 2015. Reflecting on the value of support groups, Jacobs says, “The key support comes into play when members meet and interact with other patients experiencing the same issues. PF patients often feel very isolated, and many try to hide their breathlessness, anxiety, and depression at being unable to participate in many activities. So it’s incredibly helpful for them and their caregivers to meet others who make them feel validated, provide understanding, and share practical tips for coping day to day.”

during a doctor’s visit; learning over a period of time • Feeling supported by others going through the same thing — an extremely important aspect of having a rare or not widely known disease • Meeting new friends • Learning to navigate the health care system more effectively and become an engaged and knowledgeable patient • Taking charge of the disease and setting new goals; maintaining a sense of normalcy • Helping others — many people find it therapeutic to reach out to others in the group • Reducing anxiety • Improving coping skills • Potentially changing negative health behaviors “The biggest benefit of all is feeling like you’re not alone,” McLaughlin says. “Support group members feel affirmed when they learn that their experiences are normal for someone with PF. When we survey patients about their support group experiences, ‘feeling less isolated’ is always high on the list.” Want to learn more about participating in a support group or starting one of your own? Contact the PFF Patient Communication Center at 844.TalkPFF (844.825.5733) or pcc @ pulmonaryfibrosis.org.

“…we’ve all become good friends as a result of this shared destiny we have. There’s a lot of healing that comes from the group.”

continued on next page >

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Leveraging Experience to Strengthen the Network DAVID SHERRY, the third new SGLN Steering

Leader’s Guide Expanding to Include Curriculum SALLY MCLAUGHLIN, RN, MSN, started the support group

of the Interstitial Lung Disease Program at the University of California at San Francisco. “A doctor’s visit is not enough time for patients to learn enough about the disease and discover ways to make sense of it and live with it,” she says, “so we started our support group eight years ago when our program was just getting off the ground.” McLaughlin is leading the working group updating the PFF Support Group Leader Guide, which builds on an existing leader guide but adds valuable curricular information. “We surveyed support group leaders across the country on their most important and popular topics,” she says. Based on that feedback, the guide will provide a list of suggested topics, with leader discussion points and direction to resources. “We want both the leader guide and the webinar series to be useful for both new and experienced support group leaders,” McLaughlin says. “Sometimes groups can grow stagnant, so we’re helping with new ideas. This is a living document; we want continual feedback.” After years of experience working with support groups, “I’ve come to truly appreciate their value,” McLaughlin says (also see sidebar, page 5). “We hope more people who are not near major medical centers will become involved in starting groups. With the PFF, the resources are there for them.”

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Committee chair, is a PF patient. Diagnosed in 2006, he first attended the University of Washington Medical Center support group for PF patients with some skepticism, “but then as I learned more about the disease and other people’s experiences, my feeling of dread seemed to diminish. Knowledge is power.” Until a few months ago, Sherry was the patient facilitator for the support group, but he transitioned the position to another patient as he moved into a greater volunteer role with the PFF. “I think support groups are a central and vital part of a patient’s treatment,” Sherry says. “They’re not for everybody, but the people who choose to participate find they’re not alone, learn from others’ experience in managing this disease, and develop incredible friendships. Our support group at the University of Washington is quite large, with about 50 regular attendees, and we’ve all become good friends as a result of this shared destiny we have. There’s a lot of healing that comes from the group.” Sherry’s Steering Committee working group has been instrumental in creating a review process and is reviewing all the applications submitted for the Leanne Storch Support Group Fund. “For the Fund’s first three years, grants were handled by the Foundation staff. When we received the generous grant from Boehringer Ingelheim, we decided to create a more formalized process with controls in place,” says Sherry, The more specific requirements will help improve support groups across the country, he explains. “One of the requirements for a group to receive a grant is that they report back on how they used the money. We’ll use that data to build a network that leverages everyone’s experiences and creates best practices guidelines. “We want to create a blueprint for what a successful support group will look like.”

PFF DISEASE EDUCATION WEBINAR SERIES

Archived for 24/7 Access, Explores Variety of Topics

They’re a regular feature at pulmonary fibrosis (PF) support group meetings.

Individual patients and caregivers participate in them to learn more about specific aspects of PF.

Health care providers get involved to increase their PF IQ. The Pulmonary Fibrosis Foundation (PFF) Disease Education Webinar Series, a popular tool for a variety of PF audiences, is celebrating a successful first year. Held monthly, PFF webinars are also archived at pulmonaryfibrosis.org/life-with-pf/pff-educational-resources/webinars, for 24/7 viewing from anywhere in the world. Four times a year, the webinars present “Ask a Doc.” This format invites participants to submit their PF questions, which are then answered by the PFF Medical Team during the webinar. Archived PFF Webinars include the following topics:

• “Lung Transplantation” • “Occupational and Environmental PF” • “Pulmonary Hypertension and Pulmonary Fibrosis” • “Palliative Care” • “What is Pulmonary Fibrosis?” • “Making an Accurate Diagnosis: How to Use IPF Consensus Guidelines” • “Pulmonary Rehabilitation and Support Groups” • “Caregiving 101: Supporting Others While Supporting Yourself” • “Supplemental Oxygen” • “Drug Development Process and the FDA” • “Talking with PF Patients: Truth-Telling While Maintaining Hope” • “Autoimmune-Related Pulmonary Fibrosis” • “Coping with Pulmonary Fibrosis: What About My Mental Health?” • Several “Ask a Doc” webinars

“As a newly diagnosed patient with tons of information to learn, I like the presentation and content. Great job! You have answered questions I have never thought to ask.” PFF DISEASE EDUCATION WEBINAR SERIES PARTICIPANT

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PFF AMBASSADOR PROGRAM A Personal Spin on Pulmonary Fibrosis Sharing information and support is much more meaningful when it is informed by personal experience. The national Pulmonary Fibrosis Foundation (PFF) Ambassador program, launched in July 2014, brings together patients, caregivers, and health care professionals with expertise in pulmonary fibrosis (PF) to inform, engage, and support audiences across the country. At support group gatherings, meetings with health care organizations, and fundraising events, patients and caregivers share their personal stories of living with PF, and health care professionals provide current information about the disease. “This is a small way of paying back everything the PFF has done for me surrounding my transplant,” says Doug Jones, who brings a patient’s perspective to his work as a returning PFF Ambassador. In the last year, Jones has traveled to Indiana, Illinois, Kansas, New York, and other locations to speak at a variety of events. In Washington, DC, Jones spoke to a packed Congressional briefing on pulmonary fibrosis. The briefing was held in conjunction with Rare Disease Day in February. Jones was able to help enlighten legislators and their staffs about the scope of the disease and the challenges of funding PF research. “It’s gratifying because I’m doing something,” Jones says. “I’m out there actually walking the pavement and knocking on doors to drum up support for patients and for the Pulmonary Fibrosis Foundation.” Feedback from attendees has been very positive. After Jones’s first public appearance in Evansville, Indiana, he was approached that evening in a local restaurant. “One of the people who’d been at the presentation came over to say he was so impressed by my talk that he and his wife were going to become organ donors,” Jones recalls. “That was really gratifying.”

“I encourage people to take their meds, do the rehab, and see their doctors — my main message is one of hope,” says Jones, who celebrated the fifth anniversary of his double lung transplant in August. Valeria Hatcher hopes her work as a newly appointed Ambassador will help others avoid the uncertainty and isolation she felt after learning she has PF. “When you get diagnosed, you don’t know which end is up,” she says. “I looked at all avenues to see if somebody could help me make sense of things. I felt like the Lone Ranger, and being an Ambassador will help other people with PF be aware of each other and learn from each other.” She shares Jones’s message of positivity when she’s speaking to others living with PF. “I’m heading into my sixth year after being told I’d live for two to five years,” Hatcher says. “I feel some differences, but I still drive, do my own laundry, and handle some housework. “I’ve just got too much to live for. I want to keep playing with my grandkids.” To reserve an Ambassador for your next event, contact the PFF Patient Communication Center at 844.Talk PFF (844.825.5733) or pcc @pulmonaryfibrosis.org.

Since June 2014, the PFF Ambassadors have shared their stories and spread PF awareness to over 700 people. 08

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PFF AMBASSADORS

In Memoriam:

APPEARED AT 20 EVENTS IN 14 STATES ACROSS THE US IN THE LAST YEAR

JEFFERY PETERS

AND

DIANE REICHERT

PFF AMBASSADORS: AN INSPIRATION TO MANY

University of Washington PF Support Group

The Pulmonary Fibrosis Foundation (PFF) is deeply saddened to announce

SEATTLE, WASHINGTON

the passing of PFF Ambassadors Jeffery Peters and Diane Reichert.

Washington

MUSC Patient Education Day

JEFFERY, a PFF Ambassador and support group leader,

CHARLESTON, SOUTH CAROLINA

was diagnosed with idiopathic pulmonary fibrosis (IPF) in

Breakfast Club Support Group

South Carolina ELMHURST, ILLINOIS

2010. Following his diagnosis, Jeffery and his entire family

Central Valley PF Support Group

became involved with the PFF and created “Team Jeffery

SACRAMENTO, CALIFORNIA

for PF” to help build awareness and raise money for

Illinois

the Foundation.

Takeda Pharmaceuticals Lunch & Learn SAN DIEGO, CALIFORNIA

Lake Forest Rotary Club Meeting

California

LAKE FOREST, ILLINOIS

Rally for Medical Research WASHINGTON, DC

Washington D.C.

Southampton Hospital Lunch & Learn SOUTHAMPTON, NEW YORK

Winthrop Eager Breathers Support Group

New York

MINEOLA, NEW YORK

CareConnect Nurse Training MORGANTOWN, WEST VIRGINIA

West Virginia

Jeffery and his wife, Michele, also a PFF Ambassador, shared their stories from both the patient and caregiver perspectives. Their narrative provided support, encouragement, and information about PFF to other families living with this disease. Jeffery’s daughter, Courtney Firak, joined the PFF more than three years ago and is Director of Programs. As the leaders

of “Team Jeffery for PF,” the Peters family organized an annual trivia fundraising event and participated in a number of other fundraising events including the annual “Hike for Lung Health.” “Jeffery and his family have been an integral part of our patient outreach program and our PFF family for a number of years. Their strength and determination to raise

H.O.T.T. Mommee Boot Camp

awareness and provide support to other families while living with PF has been

WEST ORANGE, NEW JERSEY

truly inspiring,” said Patti Tuomey, EdD, President and Chief Executive Officer

FDA Public Meeting – Patient-Focused Drug Development for IPF

of the PFF.

New Jersey

SILVER SPRING, MARYLAND

DIANE was diagnosed with IPF in 2013 and following her

DFW Breathe Support Group

diagnosis became a PFF Ambassador. She generously shared

DALLAS, TEXAS

her story with other patients and caregivers coping with PF,

Garden State 5K Run/Walk for PF

providing limitless encouragement, and highlighting the

CRANFORD, NEW JERSEY

educational resources provided by the PFF.

Knock Down Pulmonary Fibrosis Bowling Event

She testified before the FDA at the “Patient-Focused Drug

Texas

Georgia

ATLANTA, GEORGIA

Cruisin’ Toward A Cure HOLLAND, INDIANA

Missouri

Greater Kansas City PF Support Group KANSAS CITY, MISSOURI

Development for IPF” meeting in September 2014 and was the driving force behind the PFF’s #BlueUp4PF campaign, started in 2012. The #BlueUp4PF campaign continues to raise awareness of PF by encouraging patients, caregivers, friends, and family to dye a blue streak in their hair in honor of Global Pulmonary Fibrosis Awareness Month in September. She also provided

Bristol-Myers Squibb “Voice of the Patient Event”

PF awareness by participating in interviews during the PFF’s national radio media

South Miami Hospital PF Support Group

tour last winter along with PFF Senior Medical Advisor, David J. Lederer, MD, MS.

Florida

SOUTH MIAMI, FLORIDA

Oahu PF Support Group

Michigan

“Diane’s optimism and enthusiasm for life remains an incredible inspiration not

KAILUA, HAWAII

only to us at the PFF but also to everyone whose lives she touched,” said Courtney

Spectrum Health PF Support Group

Firak. “She always remained focused on living her life to the fullest and

GRAND RAPIDS, MICHIGAN

helping others.”

Hawaii

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PFF PATIENT COMMUNICATION CENTER Your Comprehensive Source of PF Information Obtaining reliable information about pulmonary fibrosis (PF) and finding sources for care and support became a lot easier with the creation of the Pulmonary Fibrosis Foundation’s (PFF) Patient Communication Center (PCC) in 2014.

“The PCC is an awesome resource that provides patients with information about their diagnosis. They also help health care professionals with information to provide to patients and answer any questions. The PCC responded so quickly and were ready to communicate via internet and phone. The staff was and continues to be great. We have created information packets on pulmonary fibrosis for our patients so that they will always have reference to their pulmonary diagnosis. ” JENNY MUÑOZ, RN, BSN CLINICAL NURSE COORDINATOR ADVANCED LUNG DISEASE PROGRAM NORTON THORACIC INSTITUTE ST. JOSEPH’S HOSPITAL & MEDICAL CENTER

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The first-ever comprehensive, centralized communication center for the PF community, the PCC is a dedicated information hub operated by PFF staff including health care professionals. The PCC offers all-inclusive educational resources for patients, caregivers, and health care providers. “People living with PF and their caregivers need two things from us: information and support,” says David J. Lederer, MD, MS, Senior Medical Advisor, Education and Awareness, who often answers incoming calls and helps respond to email inquiries. “Reliable information about the disease, its expected course, the therapies that are available, and local resources are critical to managing this disease,” he continues. “The PCC assists with the support component by helping people find in-person and online support groups where they can reach out to other people with this condition and their caregivers,” Dr. Lederer adds. “When you call the PCC , you can expect to immediately talk with someone who’s knowledgeable not only about the Foundation, but also about the disease itself and the support, tools, and resources we offer those living with PF and their caregivers.” According to Dr. Lederer, the most common question the PCC receives concerns how and where callers can find a doctor or health care team that specializes in PF. The PCC is based in the PFF’s office in Chicago, and staffed Monday through Friday, 9:00 a.m.–5:00 p.m. (Central time). Contact 844.Talk PFF (844.825.5733) or pcc @pulmonaryfibrosis.org.

“Thank you so much!”

sponsors

AS OF OCTOBER 1, 2015

“The Summit was valuable to me because it gave me a unique opportunity to interact with members of the entire PF community — patients, caregivers, physicians, researchers, nurses, and allied health professionals.”

TALEENA KOCH / PFF AMBASSADOR

registration To register online, go to: www.pffsummit.org/register.html To register by phone, call: 888.733.6741 or +1 312.587.9272 The PFF Summit venue, JW Marriott Washington, DC, is easily accessible by train, plane, or car. Visit www. pffsummit.org/transportation.html to access discounts of up to 10% when traveling to the Summit with United Airlines or Amtrak!

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. Additional support is provided by Novartis and The France Foundation. BREATHE BULLETIN

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program highlights Interactive plenary sessions designed for health care professionals, patients and caregivers, plus patient and caregiver talks, and cutting-edge research presentations are among the highlights of this extraordinary conference. THURSDAY, NOVEMBER 12

FRIDAY, NOVEMBER 13

SATURDAY, NOVEMBER 14

Arrivals / Registration

Registration and

11:00 a.m.–8:00 p.m.

Continental Breakfast

Pre-Session for Patients

7:00 a.m.–8:15 a.m.

and Caregivers

Plenary Session

1:00 p.m.–4:00 p.m.

8:15 a.m.–10:00 a.m.

Welcome Reception and

Pulmonary Fibrosis

Poster Presentation

Advocacy Workshop

Survey Session

5:00 p.m.–8:00 p.m.

12:15 p.m.–1:15 p.m.

Sessions for Professionals

To register for PFF Summit 2015,

10:30 a.m.–4:45 p.m.

10:30 a.m.–5:00 p.m.

visit www.pffsummit.org/register.html.

Sessions for Patients

and Caregivers

10:30 a.m.–2:45 p.m.

10:30 a.m.–3:00 p.m.

Cocktail Hour / Networking Dinner

FACULTY

6:30 p.m.–10:00 p.m.

AS OF OCTOBER 1, 2015 HAROLD R. COLLARD, MD PFF SUMMIT CHAIR

JOAO ALBERTO M. DE ANDRADE, MD

NAFTALI KAMINSKI, MD

DANIEL M. ROSE, MD

A. MICHAEL R. BLACKBURN, PHD

MARYL KREIDER, MD, MSCE

CHRISTOPHER J. RYERSON, MD

WILLIAMSON BRADFORD, MD, PHD

ABIGAIL R. LARA, MD

CHRIS D. SCHUMANN, MS, RCEP, CES

KEVIN K. BROWN, MD

JOSEPH A. LASKY, MD

MARVIN I. SCHWARZ, MD

AMY HAJARI CASE, MD

DAVID J. LEDERER, MD, MS

ANDREW M. TAGER, MD

THOMAS V. COLBY, MD

JOYCE LEE, MD

TIMOTHY P.M. WHELAN, MD

GREGORY P. COSGROVE, MD, FCCP

BRETT J. LEY, MD

HILARY WILSON, PHD

VINCENT COTTIN, MD, PHD

ANDREW H. LIMPER, MD

JANET WOODCOCK, MD

SONYE K. DANOFF, MD, PHD

KATHLEEN O. LINDELL, PHD, RN

JERRY EU, MD

DAVID A. LYNCH, MD

KEVIN R. FLAHERTY, MD, MS

FERNANDO J. MARTINEZ, MD, MS

CHARLENE D. FELL, MD, MSC

A. BRUCE MONTGOMERY, MD

PAT FURLONG

ANA L. MORA, MD

CHRISTINE KIM GARCIA, MD, PHD

STEVEN D. NATHAN, MD, FCCP

KEVIN F. GIBSON, MD

IMRE NOTH, MD

DEBORAH GILLMAN, PHD

MITCHELL A. OLMAN, MA, MD

MARILYN K. GLASSBERG, MD

RAFAEL J. PEREZ, MD

ZOË D. BUBANY

JESSE ROMAN, MD

JANE HARRISON, LCSW, CCTSW

PETER J. PITTS

GREGORY P. COSGROVE, MD, FCCP

DANIEL M. ROSE, MD

ERICA L. HERZOG, MD, PHD

GANESH RAGHU, MD

EIRILL FALCK

CHRIS D. SCHUMANN, MS, RCEP, CES

ANNE E. HOLLAND, PHD

LUCA RICHELDI, MD, PHD

KEVIN R. FLAHERTY, MD, MS

JEFFREY J. SWIGRIS, DO, MS

SUSAN S. JACOBS, RN, MS

JESSE ROMAN, MD

SUSAN S. JACOBS, RN, MS

PATTI TUOMEY, EDD

IVAN O. ROSAS, MD

DOLLY KERVITSKY, CRT, CCRC

JERI WEBB

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View a current list at www.pffsummit.org.

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

DAVID J. LEDERER, MD, MS

KATHLEEN O. LINDELL, PHD, RN

poster presentation As part of the PFF’s commitment for collaboration amongst our various constituency groups, we invite all of our attendees to walk through the poster presentation held Thursday, November 12 from 5:00 p.m. to 8:00 p.m. in conjunction with the Welcome Reception. This is a wonderful opportunity to see a snapshot of current research projects and to speak with researchers who are working tirelessly to help improve the understanding of pulmonary fibrosis. All academic researchers submitted abstracts to the PFF, which were reviewed by a panel from the Scientific Advisory Committee ( SAC ). Selections were made based on subject matter deemed appropriate for poster presentation at the PFF Summit 2015, and include original ideas in the following areas: • Basic Research PRESENTATION AND RECOGNITION • Translational Research Presenting authors are expected to be present at their posters between • Clinical Research 5:00 p.m. and 7:00 p.m. Academic posters will be evaluated by the SAC • Social Science/Quality of Life Research selection panel and the top five poster presenters will be recognized at the Industry abstracts were not subject to peer review and Networking Dinner on Friday, November 13. The top five poster presenters were selected based on a first come, first served basis. will also be selected to discuss their research during one of the three individual health care professional focused sessions on Friday, November 13 or Saturday, Selected abstracts represent a diverse group of researchers November 14. We have encouraged poster presenters to leave their posters from around the world. Research will be presented by on display until the completion of the conference on Saturday. academic institutions and companies from all across the United States, United Kingdom, Canada, Belgium, The Poster Presentation is made possible by our presenting sponsors, and Netherlands, France and Brazil. by a generous donation made by the Pete DeVito Memorial Foundation.

“The Poster Presentation was really interactive, and the possibility to do a short presentation EXHIBITORS

during the full assembly was a great experience

AS OF OCTOBER 1, 2015

and excellent way to discuss and promote

ACRO PHARMACEUTICAL SERVICES

new research in the field.”

BAYER PHARMA AG

ANA MORA, MD, UNIVERSITY OF PITTSBURGH /

BOEHRINGER INGELHEIM

PFF SUMMIT 2013 HONORABLE MENTION RECIPIENT

CARING VOICE COALITION DYSKERATOSIS CONGENITA OUTREACH, INC. FLUIDDA, INC. GENENTECH INSPIRE MAYO CLINIC NSPIRE HEALTH ORSINI HEALTHCARE PATIENT SERVICES, INC. (PSI)

CME/CE INFORMATION Health care professionals will have the opportunity to earn continuing education credits. CME will be provided by The France Foundation, and CE credits for nurses will be provided by the Postgraduate Institute for Medicine. For more information, visit www.pffsummit.org/ CME.html. The program is supported by an educational grant from Gilead Sciences.

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SPREADING THE WORD ACROSS THE WORLD We let the world know! From posting on social media, to organizing educational events, to planning fundraising dinners, members of the pulmonary fibrosis (PF) community participated in a wide variety of educational and fundraising activities during Septemberâ&#x20AC;&#x2122;s Global Pulmonary Fibrosis Awareness Month. All these activities were of great benefit to the PF community.

Social Media Sensation

Shanghai, China

On Facebook, Twitter, and Instagram, # PFWarriors shared their stories (other hashtags: #GlobalPFAwareness, #pulmonaryfibrosis, # GPFAM2015, #GlobalPFAwareness, #MakeEveryBreathCount).

Belmar, New Jersey

Where in the World is PF Awareness? Foundation

supporters traveling the globe or staying close to home posted photos of themselves wearing PFF Breathe Bracelets. Blue-It-Up or Pay-It-Up (#BlueUp4PF). This social media

fundraising and awareness campaign, started by the late PFF Ambassador Diane Reichert, was continued in memory of her tireless spirit. Participants wore blue or dyed their hair blue and posted photos on social media while making contributions to the PFF.

Barcelona, Spain

Smokey Mountains, Tennessee Diane Reichert

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Go, Team PFF! Photos from Global Pulmonary Fibrosis Awareness Month events, including event leaders, special guests, and PFF blue and green decorations, appeared across social media.

Piedmont Healthcare, Atlanta, a PFF Care Center Network site, held an educational event on October 10, 2015 in conjunction with Global Pulmonary Fibrosis Awareness Month.

Kevin R. Flaherty, MD, MS, Steering Committee Chair, PFF Care Center Network and PFF Patient Registry, went #BlueUp4PF and jumped into Lake Superior (a balmy water temperature of 57 degrees) during Global Pulmonary Fibrosis Awareness Month.

For the third year in a row, dedicated PF advocate, Mary Pat Slattery spearheaded an effort in Chicago to declare September Global Pulmonary Fibrosis Month. Illinois Senator Don Harmon, along with family members Laurette and Judy, presented the PFF with a proclamation declaring September Global Pulmonary Awareness Month in Illinois.

A Journey to Honor His Father Shashank Gangil lost his father, Suresh Chand Gangil, to idiopathic pulmonary fibrosis (IPF) last year. To honor the memory of his travel-loving dad, he embarked in September on a fundraising trip from Hong Kong to New Delhi. He commented that the trip was “dedicated to all those IPF patients throughout the world who suffer silently without realizing what’s wrong with them.” His solo journey of almost 4,000 miles on foot, rail, bus, and boat passed through China, Laos, Thailand, and Burma.

Running, Golfing, Bowling, Noshing, and Painting for PF

The 5th Annual Donna Schwartz Memorial Walk for Pulmonary Fibrosis was held in Crivitz, Wisconsin on September 19. Over $1,700 was raised to support the mission of the PFF.

The secret to a successful fundraising event: choose an activity or interest that’s meaningful to the organizers or to the individuals being honored or remembered. During Global Pulmonary Fibrosis Awareness Month, the PF community got busy with a number of special events benefiting the PFF. A few examples: the Overlake Medical Center Labor Day Half and Four-Mile Run in Redmond, Washington; the Charity Ride for PFF in Williamsburg, New York; Bowling for Pulmonary Fibrosis in Sterling Heights, Michigan; Dine Out for Pulmonary Fibrosis Awareness in Butler, Pennsylvania; and Paint for Pulmonary Fibrosis Awareness in Crowne Point, Indiana. For a complete list of events held during Global Pulmonary Fibrosis

Myrna Taylor, PFF Ambassador and member of the PFF Support Group

Awareness Month, visit www.globalpfawareness.org/calendar.html.

Leader Network with family and friends.

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LET THE WORLD KNOW Thanks to you, we hit 25K followers on Facebook!

If you have been touched by pulmonary fibrosis you have an important message to share. Hearing about what you are going through helps others who are not familiar with the disease understand what #PFWarriors live with every day. Let the world know about your journey with PF — from the little things that make you smile to the big milestones like using oxygen in public for the first time or post-transplant updates. Share your posts on the PFF Facebook page, Twitter, and Instagram or email your personal experiences and photos to the PFF at socialmedia @ pulmonaryfibrosis.org. Once you email us, we’ll follow up with you and discuss how we would like to let the world know about you. We may feature you in the Breathe Bulletin, on our website, in emails or fundraising appeals, or on social media.

BECAUSE OF YOU we’ve been able to reach more people than ever before through our Facebook page! Let’s keep the momentum going and make 2015 our biggest year yet. We can’t wait to see your posts and emails! THANK YOU!

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TEAM PFF Team PFF members make a difference in the lives of those affected by pulmonary fibrosis! Team PFF hosts more than 100 events annually to support disease awareness and research. Learn how you can get involved at www.pulmonaryfibrosis.org/teampff.

PAJAMA JAM FOR PF

IMAGES COURTESY OF STAR NEWS GROUP.

CLAUDIA HASTINGS’s middle school usually hosts a pajama day each year. When Claudia

noticed it wasn’t scheduled on last year’s academic calendar, she came up with a special way to honor her grandfather, Bruce Zaun, who had recently passed away from PF. Claudia asked her school to host a February PAJAMA DAY benefiting the Pulmonary Fibrosis Foundation (PFF) — and students enthusiastically donated $1 each to wear their favorite pair of pajamas to school that day. “We raised a little over $400,” says Claudia, who entered high school this fall. She advises other kids thinking about hosting PF fundraisers to “go for it. It’s for a good cause, it really makes a difference, and the person you’re honoring would be really proud of you. My grandfather was always laughing, and I know he’d have a funny joke to make about pajamas in school.”

TAKING THE LEAD IN SPREADING AWARENESS When BARBARA MURPHY was diagnosed with pulmonary fibrosis (PF) in 2003, “I looked around for a support group, and there were none to be found,” she says. The next year, Murphy started the GARDEN STATE PULMONARY FIBROSIS SUPPORT GROUP, still the only gathering of its kind in New Jersey. In September, the group hosted its seventh 5K WALK/RUN , benefiting the Pulmonary Fibrosis Foundation (PFF), in Nomahegan Park, Cranford, New Jersey. The group set a goal of raising more than $120,000 total for the seven events — a particularly big achievement since the 5K has no corporate sponsors. Barbara, who is thriving after a 2012 lung transplant, has worked hard on every 5K . She continues to lead the support group and is heartened by the increase in public awareness since its founding 11 years ago. “The PFF is doing its part in making awareness and education happen,” she says.

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FIGHTING IPF ON THE LINKS AND IN THE LABS Pete DeVito, who passed away in 2009 from idiopathic pulmonary fibrosis (IPF), loved golf and played whenever possible. “We thought a golf outing was a fitting way to raise money for pulmonary fibrosis (PF) research while honoring his memory,” says son NICK DEVITO, who once again joined his mother, Susan; his brothers, Peter and Daniel; and their families in hosting the DEVITO MEMORIAL FOUNDATION’S ANNUAL GOLF OUTING AND DINNER this past summer. Each year the family has grown the event and keeps things new and fresh by upgrading the prizes, competitions, raffles, and refreshments. The DeVito Memorial Foundation has donated over $134,000 in total from the Golf Outing and Dinner proceeds to support the mission of the Pulmonary Fibrosis Foundation. Next year’s golf outing will be on Saturday, June 4. “We’re also very excited to be a part of the PFF Summit 2015,” says Pete. The DeVito Foundation is the generous sponsor of the Summit’s “Welcome Reception and Poster Presentation.”

CARDS AND CAMARADERIE When Irv Feldman played a casual game of poker with his sons, “He forgot he was sick and didn’t even cough because he loved cards, competition, and having us around,” says son Mitch. Laury, Mitch’s brother, added, “Playing cards was a way for the Feldman family to come together, share quality time, laugh and have a little competitive fun — what we are best known for. Even our mom, Sylvia, enjoyed our family poker camaraderie.” Irv passed away in 2013, eight years after his diagnosis of IPF, and both his sons are convinced that their regular family card games helped their father live longer. To honor their dad and raise money for the Pulmonary Fibrosis Foundation (PFF), the FELDMAN FAMILY sponsors the annual IRV FELDMAN TEXAS HOLD’EM TOURNAMENT AND CASINO NIGHT in Deerfield, Illinois. Originally a private poker tournament among friends, the event grew in its second year to a 400-attendee evening to include casino games, raffles, and food. “My dad loved action and seeing people have a good time,” Laury says. “I think he’d like what we’ve done.” Mitch agrees: “It’s been a win-win-win. We’re increasing awareness, raising money, and doing it all in a way my dad would be proud of. In total, the event grossed over $140,000 in support of the PF community. We look forward to continued success at our 2016 event on Saturday, March 5 and for many years to come.”

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UNITED IN A SINGLE GOAL After James Lynam passed away from idiopathic pulmonary fibrosis (IPF) in 2011, nephew SEAN O’DELL wanted to do something to honor his uncle. For the first couple of years, he participated in existing fundraising events, “but my wife and I like to run and do a lot of 5K events, so we felt confident hosting one,” O’Dell says. The NJ5K FOR PULMONARY FIBROSIS — JAMES LYNAM MEMORIAL 5K RUN/1 MILE WALK , which was held in Washington Lake Park in Sewell, New Jersey, celebrated its second year in 2015, raising $9,000. PFF Ambassador Diane Reichert, who passed away this year, was a speaker at the 2014 event, and O’Dell plans to incorporate a special remembrance of Reichert into the 2016 NJ5K . In addition to the 5K run, the annual event includes a one-mile walk popular with participants who have pulmonary fibrosis. “I have as many walkers as runners at this point,” O’Dell says. “Hopefully, it’s going to get bigger each year — that’s my goal.”

LIFE SKILLS THAT IMPROVE OTHERS’ LIVES BRIANNA BRODERICK has a passion for community service. When her high school participated in the

SkillsUSA national career and technical skill-building program last year, Brianna and several friends focused their SKILLSUSA PROJECT, BREATH OF FRESH AIR, on raising money and awareness for pulmonary fibrosis (PF). Brianna’s team raised over $2,000 through restaurant fundraising events, a school bake sale, and PFF Breathe Bracelet sales. Brianna’s team took the gold in the New Jersey state competition and went on to place seventh in the national competition, an almost unheard of feat for a high school freshman. Brianna lost both her mother, Sharon Broderick, and her uncle, John McHale, to PF. “I feel my mom’s presence when I do this kind of work,” she says. Her advice for other young fundraisers: “Put your whole heart into it. The internet is a great resource; you’re not only talking to people in your immediate community, you’re connecting with people you might not have the privilege of speaking with otherwise.”

BATTERING PULMONARY FIBROSIS If hosting a fundraiser sounds intimidating, take a page from JANA THOMPSON ’s (cook)book. Thompson’s mother, Patsy Kelley, passed away from pulmonary fibrosis (PF) in 2013. Thompson’s grandmother and uncle also died from the disease. “At about the one-year mark after my mom passed away, my brother, my father and I said, ‘We have to do something,’” Thompson remembers. The very busy family decided a fundraising meal was an achievable goal, and the FLATTEN PULMONARY FIBROSIS PANCAKE BREAKFAST

was held for the first time this past April in the Dallas area. “People were so generous. Our goal was a modest $2,000 and we raised that even before the breakfast,” says Thompson, who reports that the final proceeds topped $5,000. Her family is exploring possibilities for future fundraisers, including a wine-tasting event and a musical theater production. “When you go so far past your original goal, you get the itch to do even more,” Thompson says. “The motivation that came out of our pancake breakfast was great.”

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congrats 3+ years 145

Jack Lim

Avon American Legion Post

Jeanna Moritz

Pooja Bahet

Barbara Murphy

Cindy Chandler

Kelly Partenheimer

Joseph DeGrazia Jr.

Kim Perry

Nick DeVito

Michele Peters

Sean Griffin

Michelle Propson

Greta Hodge

Lisa Tighe

Ruth LaClair

Karen Westphal

Lily Abrams

Collin Geiselman

Julee Oddino

Adah Chapter #15 OES of Utah

Hymie Glick

Sean O’Dell

Emily Good

Lori O’Mara and son David

Congratulations to Team PFF Event Leaders for their years of service

1–2 years C/O Ann Martin, PM, Secretary

Colleen Attwell

Linda Osterman

Matt and Mary Clare Babel

Celeste Gonzalez

Jefferson Parish

Nicole Baca

Ms. Janet Greenspan’s

Audri Perron

Erin Bale

3rd Grade Class

Nicole Polychronopoulos

Stephanie Banks

Jackie Hall

Sandhya Ravindranath

Katie and Jennifer Blair

Nicolle Hanson

Terri Rosner

Ilga Bokalder

Katie McKeehan Hart

John Rost

Lisa Boyd

Alyssa Haskins

Debbie Rude

Bravelets

Allie Havens

Cheryl Runyon

Brianna Broderick

Doris Harder

Lisa Talbot

Donna Brutkoski

Tammy Herring

Erin Salius

Steve Caudell

Glenda Hocker

Patricia Seidensticker

Viridiana Carrillo

The Bornstein and Jones Family

Suzy Schneider

Marcy Solmson and Amy Hajari Case

Jessica Ippolito

Ryan Shen

Lisa Christiansen

Brenda Johnson

Betty A. Smith

Mary Beth Cormier

Meritta Kennedy

Jennifer Smith

Rachel Wilgoren-Daniels

Karen Lane

Marsha Stallings of Masterbrand Cabinets

Vicky Dastillung

JoAnn Kohout

Jennifer Stanley

Heather Davis

Brenda LeChien

Dana Stork

Robin Dillon Dellinger

Gary Leibovitz

Family Suarez (Stephanie Guerrero)

Jen DeRosa

Barbra Letos

Myrna Taylor

Suzanne Doerries

John Logan

Sharon Turchi

Evelyn Dowell

AZ McHugh Girls

Sandi Volner

Lianne Shaw Hales and Sean Dugan

(Providence Elementary School)

(Kaitlyn and Molly McHugh)

Roger Wallace

Sara Dykstra

Sarah Manning

Sandra Westergren

Ellen Tullock and Doug Earthman

Xiomara Gonzalez-Martell

West Insurance

Eric Edwards

Kerri McDonnell

Roger and Marilynne Wilander

Dawnie Ellison

Frances McMahon

Dorothy Wilgus

Rebekah Englishbee

Grace Melrose

Christine Williams

Sonia Ferril

Mowery Clinic (Chelsea Bonilla)

Vickie Williamson

Dahlia Ferrer

Jordan Muzer

Alison Wood

Cynthia Flores

Kaleb Neil (Katrina Neil)

Roger Wood

Bridget Friend

Oak Creek Camp Ground

Linda Zion

Olivia Gauthier

Julie Willis O’Connor

Traci Zoller

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thank you Thanks to our donors! Fall is the season of reflection and the perfect time to celebrate our accomplishments of the past year â&#x20AC;&#x201D; made possible through your incredible support. We expanded the PFF Care Center Network (CCN) from nine to 21 sites and plan to increase the number

of medical institutions included in the Network to 40 in 2016. We also increased our Global Pulmonary Fibrosis Awareness Month activities, including the #BlueUp4PF and Where in the World is Pulmonary Fibrosis? initiatives, and gained greater insight into the perspectives of patients and caregivers who shared their experiences, accomplishments, and photos through PFF social media. Our third biennial health care conference, the PFF Summit 2015 is right around the corner and promises to be the most groundbreaking PFF meeting to date, including even greater patient engagement, with patients participating as presenters as well as during patient-focused sessions. Looking ahead to 2016, we strive to continue this incredible momentum thanks to our ongoing partnership with the entire PF community. As the holidays approach and we focus on all that we are thankful for, we would like to take this opportunity to say thank YOU â&#x20AC;&#x201D; our dedicated donors! Without your unwavering support we would not be able to reach our goals and continue to make a lasting impact on the PF community. So whether you choose to donate to the PFF online through #GivingTuesday or in response to our year-end appeal letter, please know that your support is greatly appreciated and makes a real and lasting difference to everyone living with pulmonary fibrosis.

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philanthropy SPOTLIGHT ON PHILANTHROPY

Taking Every Chance to Tell the PF Story Kathy Owens Tullis passed away in September 2013 from pulmonary fibrosis (PF), a disease from which her mother had also suffered. Kathy’s son, Todd Tullis, has vowed to do as much as he can to spread awareness about the disease. He has utilized PFF Breathe Bracelets to initiate conversations about the disease, attended the Pulmonary Fibrosis Foundation’s (PFF) annual Broadway Belts for PFF!, and faithfully supported the Foundation with monthly contributions. Tell us about your family’s PF journey.

My grandmother also had PF, but she didn’t pass away from it, so we didn’t really understand the magnitude of this disease. My mom was diagnosed around 2007, when she went into the hospital with pneumonia and they mentioned PF as an additional health issue, but we still didn’t realize the implications. Fast forward to October 2012, when my mom returned to the hospital and they suggested a lung biopsy. We learned a lot about PF between that biopsy and when she passed away almost a year later. There’s still so much that’s not known about PF. My mom felt a little like a guinea pig, but she stayed so positive. Her whole mantra was, “If whatever I’m going through helps someone else, then so be it.” She was so strong — she kept fighting and fighting and fighting right up to the very end.

How did your family first become acquainted with the Foundation?

We were trying to find some answers, looking up stuff online, and ran across the Foundation. It made my mom realize that she was not alone. Just reading through the information online is when I really got involved. I guess my first step was reaching out to buy PFF Breathe Bracelets, which I’ve ordered three times now. The first one I received hasn’t left my arm since I put it on in 2013. I bought them initially for family members, and then later friends would wear them and send photos of their bracelets from the beach or wherever they were in the world, saying, “Thinking of you.” I ran out of them and had to order more, and then more again. I travel a lot for work, and there’s not a flight I get on that somebody doesn’t ask me, “What’s this bracelet about?” It’s amazing how many people don’t know what this disease is and how it affects people. So I’ve been able to tell my story over and over to spread awareness. You found a unique way to celebrate your birthday through supporting the PFF.

Yes, the whole giving back became synonymous with my birthday. I tell people, “I don’t want gifts — please give to the PFF instead!” I’d wanted to attend Broadway Belts for PFF ! in 2014, but it sold out really quickly. In 2015, it fell on my birthday, and I decided to donate $10,000 and my partner Jay and I invited 10 close friends. Every one of them donated at least $200. It’s not that I have tons of money, but I wanted to take some of the money my mom left me and give back.

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GIVING OPTIONS Donations to the PFF are critical for us to maintain our momentum in serving the PF community. 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

PLAN A TEAM PFF FUNDRAISING EVENT Team PFF Event Leaders are individuals who

You wanted to have your photo taken with Broadway actress Julie Halston, driving force behind Broadway Belts for PFF!, so you got up on stage with your friends. What was that like?

We had an amazing group — everyone I invited got up on stage and Julie had her photo taken with us. It’s still my Facebook profile picture! What an amazing woman she is to do what she’s done, increasing PF awareness. You also make monthly donations to the Foundation. Why is that important to you?

That was something I started even before my mom passed away, while she was still in the hospital. One day I was in her room and she said, “You know, whatever happens to me, I want to make sure I can help somebody else.” I decided to give every single month. It’s not a significant amount, but it really adds up at the end of the year. And I love getting that email from the Foundation mentioning my mother’s name. What would you like people to know about pulmonary fibrosis?

All the times I’ve talked to people about my PFF Breathe Bracelet over the past two years, there’s been just one instance in which someone’s said, “Oh, I know somebody with that.” It shows you how very little knowledge there is about PF. After my mom was diagnosed, my siblings and I asked to be tested, and we were kind of laughed at. Our doctors said, “You don’t smoke.” I said, “Neither did my grandma.” It just goes to show how many doctors still don’t know very much about PF. So it has to be all about awareness. The more people we can make aware of this disease, the more funds become available because of that awareness, the more we can help people and their families live with this. We need more research, more doctors involved, and more ways to help people live with this, because right now there are not a lot of options. On the day my mom passed away, I told her, “Your fight has ended, but mine’s just beginning.”

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 CEO, 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. The Pulmonary Fibrosis Foundation thanks you for your generosity and support.

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research

BREAKTHROUGH INITIATIVES AT THE PFF

A Partnership That Could Change the Face of PF Living with pulmonary fibrosis ( PF) is difficult. The Pulmonary Fibrosis Foundation ( PFF) has been working for 15 years to improve the lives of people with the disease. Two new breakthrough initiatives â&#x20AC;&#x201D; the PFF Care Center Network (CCN) and the PFF Patient Registry â&#x20AC;&#x201D; have the potential to change the face of PF for years to come. CCN SITES PROVIDE EXPERT MEDICAL CARE TO PEOPLE LIVING WITH PF

The CCN, launched in 2013, was initially comprised of nine medical centers with specific expertise in treating PF, a group of diseases that are often difficult to diagnose and manage. Since then, additional funding has allowed the CCN to expand to 21 sites throughout 20 states, with new sites scheduled to join the Network before the end of 2015. Medical centers in the Network use a multidisciplinary approach to deliver comprehensive care. These specialized care teams include health care professionals with expertise in pulmonary medicine, rheumatology, radiology, pathology, gastroenterology, and thoracic surgery. With careful consideration for geographic diversity, medical centers that combine teaching, research, education, and community engagement are selected to be part of the CCN through an objective review process. This multipronged, collaborative approach is critical to managing these complex diseases and ensuring that each individual with PF receives an accurate diagnosis, obtains quality clinical care, and has access to important support services.

Your gift today supports the future of the PFF Care Center Network and the PFF Patient Registry. 24

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New PFF Research Advisory Forum to Advance Strategic Direction PFF PATIENT REGISTRY TO OPEN NEW DOORS IN UNDERSTANDING PF

In the near future the PFF is preparing to invite CCN sites to begin enrolling patients in the PFF Patient Registry, which will collect patient medical data in order to facilitate biomedical research and clinical trials. The Registry will be an electronic database of de-identified patient medical information collected during routine clinical visits. Patients will also have the opportunity to donate blood and other biological samples to a bio-repository linked to the Registry. These biological samples are critical tools that scientists will use to identify causes and mechanisms of PF that may one day lead to new treatments and a cure for the disease. At least 2,000 PF patients will be enrolled in the Registry, with the final number dependent on funding. About 60 percent of total enrollment will be targeted to include only patients with a diagnosis of idiopathic pulmonary fibrosis (IPF). Almost all other individuals with other types of PF will be eligible to participate, with no restrictions on time since diagnosis or previous clinical trial participation. Together the CCN and the Registry are expected to facilitate patient and clinician engagement in future clinical research. Investigation of biomarkers may provide important information on predictors of disease progression and severity. Furthermore, these studies will help document the patient experience of living with interstitial lung disease (ILD). Finally, this research may generate new hypotheses and endpoints for support of future studies. Ultimately this will increase awareness of relevant issues and needs in the ILD community and provide the opportunity to promote and inform policies in the larger health care community in support of ILD patients. The CCN and Registry efforts are strategically linked, and once the Registry is fully operational, it will assist researchers and health care providers in more fully understanding the disease and treatment patterns, thus eventually improving outcomes. Ongoing funding for the Registry is critical to the project’s success. The scope and depth of the Registry — and the project’s power to positively transform the way patients and their caregivers experience PF — is limited only by the funds it receives.

Robust support for research is critical to winning the fight against pulmonary fibrosis (PF). As the Pulmonary Fibrosis Foundation (PFF) develops and matures as an organization, its investment and involvement in important research grows deeper. The newly announced Research Advisory Forum (RAF) is an independent committee within the PFF. Set to launch its first meeting during the PFF Summit 2015 , the RAF will bring together a diverse group of stakeholders — clinicians, academicians, patients, caregivers, members of industry, and representatives of governmental agencies — to engage with one another regarding research priorities in PF. By promoting scientific discovery and innovation, the RAF will support the PFF’s ultimate goal of finding a cure for PF. The RAF will highlight key areas of research in the PF space and work to identify strategies to move them forward. In its advisory capacity to the PFF, the RAF will make strategic recommendations as to how the Foundation’s current programs and resources, in particular the PFF Care Center Network (CCN), can support research priorities. “The true strength and value of the RAF lies in its diverse membership” says Harold R. Collard, MD, Senior Medical Advisor, Research Advisory Forum Chair. “The collaboration and sharing of ideas across all stakeholders will be invaluable to the PFF, and I hope to the larger PF community, in accelerating PF research.” The RAF will also develop various thought leadership initiatives targeting the broad PF community, which may include the development of position statements or workshops on research topics and other priorities.

“The collaboration and sharing of ideas across all stakeholders will be invaluable to the PFF, and I hope to the larger PF community, in accelerating PF research.” BREATHE BULLETIN

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research PUTTING YOUR DOLLARS TO WORK

Research Snapshots: Two Projects with Promise The Pulmonary Fibrosis Foundation (PFF) directly funds research, promotes advocacy and fundraising 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 help advance the research of junior scientists, and the Albert Rose Established Investigator Awards, which fund established investigators. The PFF also partners with other organizations, such as the American Thoracic Society, to fund selected researchers. Each of these awards supports basic, translational, or clinical research that offers a high likelihood of improving the understanding and treatment of pulmonary fibrosis.

BLOCKING THE EFFECTS OF A FATTY ACID TO TREAT IPF Everyone has heard of trans fats. A diet high in these fats, also known as trans-unsaturated fatty acids, has been linked to heart disease. It may surprise you to know that a different kind of fatty acid that naturally occurs in the body might contribute to pulmonary fibrosis. In 2006, the PFF funded Dr. Andrew Tager’s research into the role of lysophosphatidic acid — a naturally occurring fatty acid — in pulmonary fibrosis. Dr. Tager found high levels of lysophosphatidic acid (also known as LPA) in the lungs of people with idiopathic pulmonary fibrosis (IPF). He also found that LPA helps to attract scar-producing cells (known as “fibroblasts”) to the lungs. The PFF’s early investment in Dr. Tager’s research helped him receive three grants from the National Institutes of Health (NIH) totaling nearly $2.8 million to further investigate the role of LPA and other fats in IPF. Dr. Tager’s research has led to a clinical trial of a drug that blocks the effects of LPA to treat IPF. This clinical trial is currently ongoing; read more at https://clinicaltrials.gov/ct2/ show/NCT01766817. This trial is sponsored by Biogen Idec.

About Andrew Tager, MD

Dr. Andrew Tager is a physician-scientist in the

Dr. Tager’s laboratory focuses on the pathogenesis

being evaluated in clinical trials in both

Division of Pulmonary and Critical Care Medicine,

of idiopathic pulmonary fibrosis (IPF), scleroderma

IPF and scleroderma. Dr. Tager’s important

and the Center for Immunology and Inflammatory

and other fibrotic diseases. His laboratory has

preclinical studies of LPA1 as a potential

Diseases, at the Massachusetts General Hospital

identified important roles for both biochemical

target for new anti-fibrotic therapies were

(MGH). He is the Director of the MGH Interstitial

and biomechanical drivers of fibrosis, including

supported by funding from the Pulmonary

Lung Disease Program, and an Associate Professor

the bioactive lipid mediators LPA and S1P, the

Fibrosis Foundation. Dr. Tager is also an

in Medicine at Harvard Medical School. Dr. Tager

rho kinases, focal adhesion kinase, Bcl-2 proteins,

Associate Faculty Member of the Ragon

received his MD from Harvard Medical School, and

and matrix stiffness and gradients of matrix

Institute of MGH, MIT and Harvard, which

completed both his internal medicine residency and

stiffness. Based on Dr. Tager’s preclinical studies

is dedicated to the accelerated discovery of

his pulmonary and critical care medicine fellowship

indicating that LPA signaling through one of its

an HIV/AIDS vaccine, and he has a separate

at the MGH. Dr. Tager began his own laboratory

receptors, LPA1, is required for the development

research effort there focused on HIV

after his post-doctoral research training in the

of pulmonary and dermal fibrosis in animal

prevention and cure.

laboratory of Dr. Andrew Luster, also at the MGH.

models, LPA1 receptor antagonists are currently

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Pulmonary Fibrosis a Significant Topic at ATS International Conference Almost 11,000 pulmonary, critical care, sleep researchers, and allied health care professionals attended the American Thoracic Society’s (ATS) 2015 International

• A session entitled “Advancing the Foundation for Global IPF

Conference in Denver, Colorado, May 15–20. There were many presentations

Clinical Research: Registries, Biorepositories, and Collaborative

concerning idiopathic pulmonary fibrosis (IPF) offered in the general program.

Science” included presentations on the value of registries in

Highlights of the meeting include:

guiding development of standards of care, supporting

• The Public Advisory Roundtable’s (PAR) ninth annual forum for patients and families discussed the importance of actively engaging patients in research design, since quality-of-life issues

compliance with existing guidelines, and identifying correlations between treatment strategies and outcomes. • Another session, “That’ll Be the Day: Understanding IPF Risk

are often more important to patients than clinical outcomes.

Factors and Outcomes,” compared research efforts in Korea,

The PAR panel also discussed the $247.5 million in funding for

Japan, and the US, and reflected on lessons learned from the

research related to 41 different conditions, one of which is PF,

PROOF registry in Belgium and Luxembourg.

from the US Department of Defense 2015 Defense Appropriations Act.

• During the seventh annual dinner to benefit the ATS Foundation Research Program, Marvin I. Schwarz, MD, former Chair of the

• A mini-symposium, “The Long and Winding Road to IPF

PFF Medical Advisory Board, received the 2015 Breathing for

Treatment: Expanded Analyses of Pirfenidone and Nintedanib,”

Life Award. Erica L. Herzog, MD, PhD, a 2012 PFF Research

addressed critical questions about the benefits of the two drugs.

Fund Awardee, received the Jo Rae Wright Award for Outstanding Science.

TRACING THE LINK BETWEEN PF AND AUTOIMMUNITY In recent years, scientists have made important new discoveries about how our DNA contributes to PF. For awhile researchers have been investigating the fact that genes that have shortened ends (telomeres) on chromosomes seem to increase the risk of PF (see page 27 of the Spring 2015 Breathe Bulletin for details). A recent study funded in part by the PFF and published in Nature Genetics in April 2015 now raises another potential cause. Dr. Anthony Shum of the University of California San Francisco received a PFF /American Thoracic Society partnership grant in 2012 to study the role of autoimmunity in PF. An autoimmune cause implies that your immune system attacks and injures your own cells and tissues. Examples of diseases due to autoimmunity include rheumatoid arthritis and scleroderma. Some people develop PF due to autoimmunity. About Anthony Shum, MD Dr. Anthony Shum is an Assistant Professor of

disease that can be used as a biomarker

Medicine in the Department of Pulmonary and

to detect patients with lung autoimmunity.

Critical Care at UCSF. After a clinical fellowship

His laboratory recently helped discover

in pulmonary and critical care medicine at UCSF,

a novel Mendelian syndrome of auto-

he received research training in immunology

immunity manifested by lung fibrosis and

and immune tolerance at UCSF. Dr. Shum leads

joint disease coined the COPA syndrome,

a translational research program that focuses on

based on the gene that is mutated in this

understanding the pathogenesis of pulmonary

disorder. Through his research Dr. Shum

fibrosis in the setting of autoimmune disease through

hopes to uncover diagnostic and inter-

in-depth analyses of patients and mechanistic

ventional targets that will ultimately lead

studies in animal models. Through his work he

to biomarkers and therapies that will

identified a novel lung-specific antigen targeted

directly impact patient care.

Dr. Shum examined the DNA of 21 people with autoimmunity and PF who belonged to one of five families where PF and an autoimmune disease appeared simultaneously together. Each family had between two and eight people affected by PF. He found that one gene in particular, called “COPA ,” seemed to be responsible for at least some of the PF that occurred in those families. COPA is a gene that codes for a protein that helps to move proteins around inside your cells. In Dr. Shum’s study, when COPA was not functioning well, the risk of PF due to autoimmunity went up. In December 2014, Dr. Shum received a grant from the NIH totaling nearly $1.25 million to continue his study of autoimmunity and PF. It is still unknown why abnormalities in COPA lead to autoimmunity and PF. Dr. Shum’s current research might help unlock one of the causes of PF and one day lead to new ways to treat and even prevent this disease.

in patients with autoimmune-associated lung

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research PFF RESEARCH FUND

The Pulmonary Fibrosis Foundation ( PFF) is pleased to announce the recipients of the 2015 Established Investigator and Junior Investigator Awards.

A key part of the PFF’s mission is to fund research that will enhance pulmonary fibrosis (PF) patient care and identify potential treatments for the disease. The Research Fund to Cure Pulmonary Fibrosis was created to fund innovative grants for projects that may improve the understanding of PF. The Research Fund to Cure Pulmonary Fibrosis supports two funds that are awarded each year: the Albert Rose Established Investigator Award and the I.M. Rosenzweig Junior Investigator Award. Launched in 2012, these awards support projects that work toward a better understanding of PF and encourage collaboration between industry and academic researchers. Each grant underwent a peer review process that was administered by the PFF’s Scientific Advisory Committee. Each award recipient will receive a $50,000 grant that is distributed over two years. These awards are made possible by private gifts to the PFF and generous support from Genentech and Boehringer Ingelheim.

2015 Sponsorships The PFF provides funding to sponsor educational activities across the country. Below is the list of activities that PFF has sponsored to date in 2015. • 8th Annual Yale Fibrosis Symposium – Yale University • Gordon Research Conference: “Cilia, Mucus & Mucociliary Interactions” – Washington University School of Medicine

ALBERT ROSE ESTABLISHED INVESTIGATOR AWARD The Albert Rose Established Investigator Award is named for PFF co-founder Albert Rose and provides support to established investigators to develop new projects that explore innovative areas of research. This year’s award recipients and titles of their research proposals are: • Tracy Luckhardt, MD, MS UNIVERSITY OF ALABAMA, BIRMINGHAM

“Frailty as an Outcome Measure in Idiopathic Pulmonary Fibrosis” FUNDED BY BOEHRINGER INGELHEIM

• Hon Yuen, PhD, MS UNIVERSITY OF ALABAMA, BIRMINGHAM

“Home-based Pulmonary Rehab for Patients with Pulmonary Fibrosis”

I.M. ROSENZWEIG JUNIOR INVESTIGATOR AWARD The I.M. Rosenzweig Junior Investigator Award is named for PFF co-founder Mike Rosenzweig and provides support to researchers in the early stages of their academic careers that may maintain and enhance their interest in PF. This year’s award recipients and titles of their research proposals are: • Jonathan Kropski, MD VANDERBILT UNIVERSITY

“RTEL1 and DNA Damage Signaling in Pulmonary Fibrosis” • Jose D. Herazo-Maya, MD YALE UNIVERSITY

“Serum microRNA Expression Profiles as Biomarkers in Idiopathic Pulmonary Fibrosis” FUNDED BY GENENTECH

• Interstitial Lung Disease Symposium: “Updates in Diagnosis and Management of Interstitial Lung Diseases” – Winthrop-University Hospital • Stem Cells, Cell Therapies, and Bioengineering in Lung Biology and Lung Diseases Conference – University of Vermont

2015 Partnership Grant

2016 GRANT CYCLE The call for letters of intent (LOI) for the 2016 grant cycle opens in October 2015. The LOI review process will take place in December and notifications of acceptance to submit a full application will occur in January 2016. Full grant proposals from investigators will be due in February 2016. The Scientific Advisory Committee will then peer review all applications and make final determination of awardees in

ATS Foundation / PFF

May 2016. Award recipients will be notified in June 2016 and will be acknowledged

• Award Recipient TBD

in the Fall 2016 Breathe Bulletin, on the PFF website, and on all other pertinent and print communications and/or materials.

W W W.PULMONARYFIBROSIS.ORG

“The last year has seen so many important developments in the treatment of pulmonary fibrosis but we all know that raising money and spreading awareness must continue in order to find a cure. Toward that end Broadway Belts has plans already underway to make our 2016 event even bigger and more far reaching than ever before! Please visit www.pulmonaryfibrosis.org for more information. See you all soon.” JULIE HALSTON / AWARD-WINNING ACTRESS AND DEVOTED PF ADVOCATE

SPONSORSHIPS NOW AVAILABLE. Contact Angela Perillo at aperillo @ pulmonaryfibrosis.org for more information.

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2015 CALENDAR

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

PF COMMUNITY EVENTS OCTOBER 2

•

Boston-Providence ILD

OCTOBER 17

Houston Pulmonary Fibrosis

•

NOVEMBER 21

•

Houston Pulmonary Fibrosis

Collaborative Presents: A Symposium for

Support Group Meeting

Those Living with IPF

HOUSTON, TEXAS

BOSTON, MASSACHUSETTS OCTOBER 5

•

IPF World Week

AMA Fuori dal Buio WORLDWIDE OCTOBER 9

OCTOBER 24

•

Pilot Managing Patients

TUCSON, ARIZONA OCTOBER 10

•

Global PF Awareness Day

PFF

@ CHEST 2015

American College of Chest Physicians MONTREAL, CANADA NOVEMBER 2

with IPF – Case-Based Symposium

•

Simmons Center for Interstitial

#GivingTuesday

•

Simmons Center for Interstitial

VIRTUAL DECEMBER 7

Lung Disease IPF Support Group Meeting Annual Holiday Party

PITTSBURGH, PENNSYLVANIA

NOVEMBER 10

•

LV-IPF Support Group Meeting

EASTON, PENNSYLVANIA

at Piedmont Atlanta Hospital

•

Lung Disease IPF Support Group Meeting

NOVEMBER 12–14

ATLANTA, GEORGIA OCTOBER 13

DECEMBER 2

Pulmonary Fibrosis Foundation

LV-IPF Support Group Meeting

DECEMBER 8

•

LV-IPF Support Group Meeting

EASTON, PENNSYLVANIA DECEMBER 11

•

Stress and Relaxation Workshop

SOUTH MIAMI, FLORIDA

WASHINGTON DC

EASTON, PENNSYLVANIA

TEAM PFF EVENTS OCTOBER 3

•

Pinkie Run/Walk in memory

of Merion Valentine Adams SPRING, TEXAS OCTOBER 3

•

Maureen’s Memorial Mile Run

MIAMI, FLORIDA OCTOBER 3

•

6th Annual Cruisin’ Toward

OCTOBER 9

•

Bowling for Pulmonary Fibrosis!

STERLING HEIGHTS, MICHIGAN OCTOBER 11

•

The Newport and Walt Disney

OCTOBER 29

•

Philadelphia Flyers Pulmonary

Fibrosis Awareness Night PHILADELPHIA, PENNSYLVANIA

World Marathons

DECEMBER 12

NEWPORT, RHODE ISLAND

MAGNOLIA, OHIO

OCTOBER 18

•

Points for Pulmonary Fibrosis

Breathe Easy Visual Arts

a Cure for PF… Because Breathing Matters

Competition and Exhibition

HOLLAND, INDIANA

PHILADELPHIA, PENNSYLVANIA

Arming Patients and Families with the Information They Need The more patients and caregivers know about pulmonary fibrosis (PF), the better equipped they are to manage and cope with the disease. “Understanding Pulmonary Fibrosis: A Seminar for Patients, Caregivers, and Families” took place at Stanford University on March 7. More than 100 people attended the full-day event sponsored by the Stanford School of Medicine, University of California San Francisco (UCSF), University of California Davis Medical Center, and the Pulmonary Fibrosis Foundation. The event featured leading experts in lung disease addressing topics including diagnosis and management of pulmonary fibrosis, lung transplantation, pulmonary rehabilitation, oxygen therapy, and resources available for patients and families. The seminar was organized by Support Group Leader Network Steering Committee Co-chairs Susan S. Jacobs, RN, MS, from Stanford University and Sally McLaughlin, RN, MSN, at UCSF (also see story page 4).

W W W.PULMONARYFIBROSIS.ORG

MEDICAL ADVISORY BOARD

PFF TEAM

BOARD MEMBERS Michael C. Henderson*

Jesse Roman, MD*

Patti Tuomey, EdD

CHAIR

PRESIDENT AND CHIEF EXECUTIVE OFFICER

Kathleen O. Lindell, PhD, RN*

Kevin K. Brown, MD*

Scott Staszak

VICE CHAIR

PAST CHAIR

CHIEF OPERATING OFFICER

David McNinch*

Marvin I. Schwarz, MD

Gregory P. Cosgrove, MD

VICE CHAIR

PAST CHAIR

CHIEF MEDICAL OFFICER

Dave Steffy*

Andrew H. Limper, MD

SENIOR ADVISOR

TREASURER

CHAIR, SCIENTIFIC ADVISORY COMMITTEE

Daniel M. Rose, MD

Patti Tuomey, EdD PRESIDENT AND CHIEF

Luca Richeldi, MD, PhD*

EXECUTIVE OFFICER

INTERNATIONAL WORKING GROUP

Joseph Borus, Esq.

CHAIR

George Eliades, PhD Jennifer A. Galvin, MD

Jeffrey J. Swigris, DO, MS* EDUCATION WORKING GROUP CHAIR

SENIOR STAFF

Kevin R. Flaherty, MD, MS STEERING COMMITTEE CHAIR, PFF CARE CENTER NETWORK AND PFF PATIENT REGISTRY

David J. Lederer, MD, MS SENIOR MEDICAL ADVISOR, PATIENT COMMUNICATIONS

Thomas E. Hales

Timothy S. Blackwell, MD*

Daniel M. Rose, MD*

Jeffrey T. Chapman, MD

Stephen A. Wald, PhD

Rany Condos, MD

CHAIR, RESEARCH ADVISORY FORUM

Aryeh Fischer, MD

Kerrie Trebonsky

Christine Kim Garcia, MD, PhD

VICE PRESIDENT, FINANCE

*EXECUTIVE COMMITTEE

Andreas Günther, MD* Susan S. Jacobs, RN, MS Naftali Kaminski, MD*

and is a Better Business Bureau

MARKETING AND COMMUNICATIONS

Michelle Clayton

Zoë D. Bubany VICE PRESIDENT, BOARD AND EXTERNAL RELATIONS

Rex Edwards

David A. Lynch, MD*

VICE PRESIDENT, PFF CARE CENTER

Fernando J. Martinez, MD, MS*

NETWORK AND PFF PATIENT REGISTRY

Ralph J. Panos, MD

has a four-star rating from Charity Navigator

VICE PRESIDENT,

DEVELOPMENT

Imre Noth, MD

The Pulmonary Fibrosis Foundation

Michelle Michael

Martin Kolb, MD

James E. Loyd, MD*

give.org

SENIOR MEDICAL ADVISOR

INTERIM VICE PRESIDENT,

Kathleen O. Lindell, PhD, RN*

ACCREDITED CHARITY

Harold R. Collard, MD

David W. Kamp, MD*

Joseph A. Lasky, MD*

accredited charity.

OFFICERS

Jeri Webb ASSOCIATE VICE PRESIDENT, EXTERNAL RELATIONS

Ganesh Raghu, MD

STAFF

David A. Schwartz, MD*

Patrick Belics

Moisés Selman, MD

Jennifer Bulandr

Patricia J. Sime, MD*

Daeshawna Cook

Charlie Strange III, MD*

Mayra Diaz

Andrew M. Tager, MD

Eirill Falck

Janet Talbert, MS, CGC

Courtney Firak

Eric White, MD

Sheena Kelly Sammantha Marks

*SCIENTIFIC ADVISORY COMMITTEE

Jennifer Mefford Amanda B. Miller Angela Perillo Réjane Pierre Anil Pirbhai Andrea Smith

BREATHE BULLETIN

| FALL 2015

WASHINGTON DC

DON’T MISS YOUR CHANCE TO ATTEND

SPONSORSHIPS AVAILABLE. contact aperillo @ pulmonaryfibrosis.org

tis the season for giving! PLEASE CONSIDER MAKING YOUR YEAR-END GIFT TO THE PFF.

www.pulmonaryfibrosis.org/donate The Pulmonary Fibrosis Foundation has a four-star rating from Charity Navigator and is a Better Business Bureau accredited charity.