Breathe Bulletin 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

26 Research Snapshots + ATS Conference Roundup

28 Research Awards

PFF NEWS

29 Broadway Belts

30 2015 Calendar

in this issue

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BREATHE BULLETIN VOLUME 15 | ISSUE 02 FALL 2015

COVER IMAGE: iSTOCK.COM / BORUT TRDINA

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.

DisclaimerThe 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.

Pulmonary Fibrosis Foundation230 East Ohio Street, Suite 304

Chicago, Illinois 60611-3201

844.TalkPFF (844.825.5733)

or +1 312.587.9272

www.pulmonaryfibrosis.org

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 inspira-

tional 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 Founda-

tion 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

03BREATHE BULLETIN | FALL 2015

programsWith 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.

“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.

SUPPORT GROUP LEADER NETWORKNew Directions, Greater Outreach

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

PFF PROGRAMS UPDATE

THE EXPANSION OF THE PFF SUPPORT GROUP LEADER NETWORK RESOURCES IS MADE

POSSIBLE IN PART THROUGH GENEROUS FUNDING FROM BOEHRINGER INGELHEIM.

04 WWW.PULMONARYFIBROSIS.ORG

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 breathless-

ness, 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 understand-

ing, and share practical tips for coping day to day.”

“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.

SUPPORT GROUP LEADER NETWORKNew Directions, Greater Outreach

HOW DOES A SUPPORT GROUP HELP? COUNT THE WAYS

Some of the benefits of support groups include:

• Learning more about your condition and treatment than you can discover

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 [email protected].

continued on next page >

“…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.”


Leveraging Experience to Strengthen

the Network

DAVID SHERRY, the third new SGLN Steering

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.”

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.”

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.

See page 30 for full article.


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

PFF DISEASE EDUCATION WEBINAR SERIES Archived for 24/7 Access, Explores Variety of Topics


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

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.TalkPFF

(844.825.5733) or [email protected].

PFF AMBASSADOR PROGRAMA 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.


Washington

South Carolina

Illinois

California

Washington D.C.

New York

West Virginia

New Jersey

Texas

Georgia

Missouri

Florida

Michigan

Hawaii

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

the passing of PFF Ambassadors Jeffery Peters and Diane Reichert.

JEFFERY, a PFF Ambassador and support group leader,

was diagnosed with idiopathic pulmonary fibrosis (IPF) in

2010. Following his diagnosis, Jeffery and his entire family

became involved with the PFF and created “Team Jeffery

for PF” to help build awareness and raise money for

the Foundation.

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

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

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

of the PFF.

DIANE was diagnosed with IPF in 2013 and following her

diagnosis became a PFF Ambassador. She generously shared

her story with other patients and caregivers coping with PF,

providing limitless encouragement, and highlighting the

educational resources provided by the PFF.

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

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

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

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

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

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

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

helping others.”

In Memoriam: JEFFERY PETERS AND DIANE REICHERT PFF AMBASSADORS: AN INSPIRATION TO MANY

PFF AMBASSADORS

APPEARED AT 20 EVENTS

IN 14 STATES ACROSS

THE US IN THE LAST YEAR

University of Washington PF Support Group

SEATTLE, WASHINGTON

MUSC Patient Education Day

CHARLESTON, SOUTH CAROLINA

Breakfast Club Support Group

ELMHURST, ILLINOIS

Central Valley PF Support Group

SACRAMENTO, CALIFORNIA

Takeda Pharmaceuticals Lunch & Learn

SAN DIEGO, CALIFORNIA

Lake Forest Rotary Club Meeting

LAKE FOREST, ILLINOIS

Rally for Medical Research

WASHINGTON, DC

Southampton Hospital Lunch & Learn

SOUTHAMPTON, NEW YORK

Winthrop Eager Breathers Support Group

MINEOLA, NEW YORK

CareConnect Nurse Training

MORGANTOWN, WEST VIRGINIA

H.O.T.T. Mommee Boot Camp

WEST ORANGE, NEW JERSEY

FDA Public Meeting – Patient-Focused Drug Development for IPF

SILVER SPRING, MARYLAND

DFW Breathe Support Group

DALLAS, TEXAS

Garden State 5K Run/Walk for PF

CRANFORD, NEW JERSEY

Knock Down Pulmonary Fibrosis Bowling Event

ATLANTA, GEORGIA

Cruisin’ Toward A Cure

HOLLAND, INDIANA

Greater Kansas City PF Support Group

KANSAS CITY, MISSOURI

Bristol-Myers Squibb “Voice of the Patient Event”

South Miami Hospital PF Support Group

SOUTH MIAMI, FLORIDA

Oahu PF Support Group

KAILUA, HAWAII

Spectrum Health PF Support Group

GRAND RAPIDS, MICHIGAN


“Thank you so much!”

“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

PFF PATIENT COMMUNICATION CENTERYour 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 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.TalkPFF

(844.825.5733) or [email protected].

”


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.

sponsors AS OF OCTOBER 1, 2015

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!

registration

“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


program highlightsInteractive 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.

FACULTYAS OF OCTOBER 1, 2015

HAROLD R. COLLARD, MD

PFF SUMMIT CHAIR

JOAO ALBERTO M. DE ANDRADE, MD

A. MICHAEL R. BLACKBURN, PHD

WILLIAMSON BRADFORD, MD, PHD

KEVIN K. BROWN, MD

AMY HAJARI CASE, MD

THOMAS V. COLBY, MD

GREGORY P. COSGROVE, MD, FCCP

VINCENT COTTIN, MD, PHD

SONYE K. DANOFF, MD, PHD

JERRY EU, MD

KEVIN R. FLAHERTY, MD, MS

CHARLENE D. FELL, MD, MSC

PAT FURLONG

CHRISTINE KIM GARCIA, MD, PHD

KEVIN F. GIBSON, MD

DEBORAH GILLMAN, PHD

MARILYN K. GLASSBERG, MD

JANE HARRISON, LCSW, CCTSW

ERICA L. HERZOG, MD, PHD

ANNE E. HOLLAND, PHD

SUSAN S. JACOBS, RN, MS

SUMMIT EDUCATION / ORGANIZING COMMITTEE

HAROLD R. COLLARD, MD

COMMITTEE CHAIR

ZOË D. BUBANY

GREGORY P. COSGROVE, MD, FCCP

EIRILL FALCK

KEVIN R. FLAHERTY, MD, MS

SUSAN S. JACOBS, RN, MS

DOLLY KERVITSKY, CRT, CCRC

DAVID J. LEDERER, MD, MS

KATHLEEN O. LINDELL, PHD, RN

JESSE ROMAN, MD

DANIEL M. ROSE, MD

CHRIS D. SCHUMANN, MS, RCEP, CES

JEFFREY J. SWIGRIS, DO, MS

PATTI TUOMEY, EDD

JERI WEBB

To register for PFF Summit 2015,

visit www.pffsummit.org/register.html.

THURSDAY, NOVEMBER 12

Arrivals / Registration

11:00 a.m.–8:00 p.m.

Pre-Session for Patients

and Caregivers

1:00 p.m.–4:00 p.m.

Welcome Reception and

Poster Presentation

5:00 p.m.–8:00 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.

Pulmonary Fibrosis

Survey Session

12:15 p.m.–1:15 p.m.

Sessions for Professionals

10:30 a.m.–5:00 p.m.

Sessions for Patients

and Caregivers

10:30 a.m.–3:00 p.m.

NAFTALI KAMINSKI, MD

MARYL KREIDER, MD, MSCE

ABIGAIL R. LARA, MD

JOSEPH A. LASKY, MD

DAVID J. LEDERER, MD, MS

JOYCE LEE, MD

BRETT J. LEY, MD

ANDREW H. LIMPER, MD

KATHLEEN O. LINDELL, PHD, RN

DAVID A. LYNCH, MD

FERNANDO J. MARTINEZ, MD, MS

A. BRUCE MONTGOMERY, MD

ANA L. MORA, MD

STEVEN D. NATHAN, MD, FCCP

IMRE NOTH, MD

MITCHELL A. OLMAN, MA, MD

RAFAEL J. PEREZ, MD

PETER J. PITTS

GANESH RAGHU, MD

LUCA RICHELDI, MD, PHD

JESSE ROMAN, MD

IVAN O. ROSAS, MD

FRIDAY, NOVEMBER 13

Registration and

Continental Breakfast

7:00 a.m.–8:15 a.m.

Plenary Session

8:15 a.m.–10:00 a.m.

Pulmonary Fibrosis

Advocacy Workshop

12:15 p.m.–1:15 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.

DANIEL M. ROSE, MD

CHRISTOPHER J. RYERSON, MD

CHRIS D. SCHUMANN, MS, RCEP, CES

MARVIN I. SCHWARZ, MD

ANDREW M. TAGER, MD

TIMOTHY P.M. WHELAN, MD

HILARY WILSON, PHD

JANET WOODCOCK, MD

View a current list at www.pffsummit.org.


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

• Translational Research

• Clinical Research

• Social Science/Quality of Life Research

Industry abstracts were not subject to peer review and

were selected based on a first come, first served basis.

Selected abstracts represent a diverse group of researchers

from around the world. Research will be presented by

academic institutions and companies from all across the

United States, United Kingdom, Canada, Belgium,

Netherlands, France and Brazil.

PRESENTATION AND RECOGNITION

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 SAC

selection panel and the top five poster presenters will be recognized at the

Networking Dinner on Friday, November 13. The top five poster presenters

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,

November 14. We have encouraged poster presenters to leave their posters

on display until the completion of the conference on Saturday.

The Poster Presentation is made possible by our presenting sponsors, and

by a generous donation made by the Pete DeVito Memorial Foundation.

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.

EXHIBITORSAS OF OCTOBER 1, 2015

ACRO PHARMACEUTICAL SERVICES

BAYER PHARMA AG

BOEHRINGER INGELHEIM

CARING VOICE COALITION

DYSKERATOSIS CONGENITA OUTREACH, INC.

FLUIDDA, INC.

GENENTECH

INSPIRE

MAYO CLINIC

NSPIRE HEALTH

ORSINI HEALTHCARE

PATIENT SERVICES, INC. (PSI)

RARE PATIENT VOICE

“The Poster Presentation was really interactive,

and the possibility to do a short presentation

during the full assembly was a great experience

and excellent way to discuss and promote

new research in the field.”

ANA MORA, MD, UNIVERSITY OF PITTSBURGH /

PFF SUMMIT 2013 HONORABLE MENTION RECIPIENT

poster presentation


SPREADING THE WORD

Social Media SensationOn Facebook, Twitter, and Instagram, #PFWarriors

shared their stories (other hashtags: #GlobalPFAwareness,

#pulmonaryfibrosis, #GPFAM2015, #GlobalPFAwareness,

#MakeEveryBreathCount).

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.

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.

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 September’s

Global Pulmonary Fibrosis Awareness Month. All these activities were of great benefit

to the PF community.

ACROSS THE WORLD

Barcelona, Spain

Shanghai, China

Belmar, New Jersey

Diane Reichert

Smokey Mountains, Tennessee


A Journey to Honor His FatherShashank 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 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

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

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.

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

Leader Network with family and friends.

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.

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.

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.

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.


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

[email protected].

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!

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


PAJAMA JAM FOR PF

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.”

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.

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.

IMA

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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.”

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.”

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.”


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.”


congrats145

Avon American Legion Post

Pooja Bahet

Cindy Chandler

Joseph DeGrazia Jr.

Nick DeVito

Sean Griffin

Greta Hodge

Ruth LaClair

Jack Lim

Jeanna Moritz

Barbara Murphy

Kelly Partenheimer

Kim Perry

Michele Peters

Michelle Propson

Lisa Tighe

Karen Westphal

Congratulations to Team PFF Event Leaders for their years of service

Lily Abrams

Adah Chapter #15 OES of Utah

C/O Ann Martin, PM, Secretary

Colleen Attwell

Matt and Mary Clare Babel

Nicole Baca

Erin Bale

Stephanie Banks

Katie and Jennifer Blair

Ilga Bokalder

Lisa Boyd

Bravelets

Brianna Broderick

Donna Brutkoski

Steve Caudell

Viridiana Carrillo

Marcy Solmson and Amy Hajari Case

Lisa Christiansen

Mary Beth Cormier

Rachel Wilgoren-Daniels

Vicky Dastillung

Heather Davis

Robin Dillon Dellinger

Jen DeRosa

Suzanne Doerries

Evelyn Dowell

Lianne Shaw Hales and Sean Dugan

Sara Dykstra

Ellen Tullock and Doug Earthman

Eric Edwards

Dawnie Ellison

Rebekah Englishbee

Sonia Ferril

Dahlia Ferrer

Cynthia Flores

Bridget Friend

Olivia Gauthier

Collin Geiselman

Hymie Glick

Emily Good

(Providence Elementary School)

Celeste Gonzalez

Ms. Janet Greenspan’s

3rd Grade Class

Jackie Hall

Nicolle Hanson

Katie McKeehan Hart

Alyssa Haskins

Allie Havens

Doris Harder

Tammy Herring

Glenda Hocker

The Bornstein and Jones Family

Jessica Ippolito

Brenda Johnson

Meritta Kennedy

Karen Lane

JoAnn Kohout

Brenda LeChien

Gary Leibovitz

Barbra Letos

John Logan

AZ McHugh Girls

(Kaitlyn and Molly McHugh)

Sarah Manning

Xiomara Gonzalez-Martell

Kerri McDonnell

Frances McMahon

Grace Melrose

Mowery Clinic (Chelsea Bonilla)

Jordan Muzer

Kaleb Neil (Katrina Neil)

Oak Creek Camp Ground

Julie Willis O’Connor

Julee Oddino

Sean O’Dell

Lori O’Mara and son David

Linda Osterman

Jefferson Parish

Audri Perron

Nicole Polychronopoulos

Sandhya Ravindranath

Terri Rosner

John Rost

Debbie Rude

Cheryl Runyon

Lisa Talbot

Erin Salius

Patricia Seidensticker

Suzy Schneider

Ryan Shen

Betty A. Smith

Jennifer Smith

Marsha Stallings of Masterbrand Cabinets

Jennifer Stanley

Dana Stork

Family Suarez (Stephanie Guerrero)

Myrna Taylor

Sharon Turchi

Sandi Volner

Roger Wallace

Sandra Westergren

West Insurance

Roger and Marilynne Wilander

Dorothy Wilgus

Christine Williams

Vickie Williamson

Alison Wood

Roger Wood

Linda Zion

Traci Zoller

1–2 years

3+ years


thank youFall is the season of reflection and the perfect time to celebrate our accomplishments

of the past year — 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 ground-

breaking 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 — 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.

Thanks to our donors!


philanthropyKathy 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.

SPOTLIGHT ON PHILANTHROPY

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.

Taking Every Chance to Tell the PF Story

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.


philanthropy GIVING OPTIONSDonations 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

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.

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.”


researchBREAKTHROUGH INITIATIVES AT THE PFF

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 — the PFF Care Center

Network (CCN) and the PFF Patient Registry — 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 multidisci-

plinary 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.

A Partnership That Could Changethe Face of PF


New PFF Research Advisory Forum to Advance Strategic DirectionRobust 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 work-

shops on research topics and other priorities.

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 docu-

ment 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.

“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.”


research

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.

Research Snapshots: Two Projects with PromiseThe 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.

About Andrew Tager, MD

Dr. Andrew Tager is a physician-scientist in the

Division of Pulmonary and Critical Care Medicine,

and the Center for Immunology and Inflammatory

Diseases, at the Massachusetts General Hospital

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

Lung Disease Program, and an Associate Professor

in Medicine at Harvard Medical School. Dr. Tager

received his MD from Harvard Medical School, and

completed both his internal medicine residency and

his pulmonary and critical care medicine fellowship

at the MGH. Dr. Tager began his own laboratory

after his post-doctoral research training in the

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

PUTTING YOUR DOLLARS TO WORK

BLOCKING THE EFFECTS OF A FATTY ACID TO TREAT IPF

Dr. Tager’s laboratory focuses on the pathogenesis

of idiopathic pulmonary fibrosis (IPF), scleroderma

and other fibrotic diseases. His laboratory has

identified important roles for both biochemical

and biomechanical drivers of fibrosis, including

the bioactive lipid mediators LPA and S1P, the

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

and matrix stiffness and gradients of matrix

stiffness. Based on Dr. Tager’s preclinical studies

indicating that LPA signaling through one of its

receptors, LPA1, is required for the development

of pulmonary and dermal fibrosis in animal

models, LPA1 receptor antagonists are currently

being evaluated in clinical trials in both

IPF and scleroderma. Dr. Tager’s important

preclinical studies of LPA1 as a potential

target for new anti-fibrotic therapies were

supported by funding from the Pulmonary

Fibrosis Foundation. Dr. Tager is also an

Associate Faculty Member of the Ragon

Institute of MGH, MIT and Harvard, which

is dedicated to the accelerated discovery of

an HIV/AIDS vaccine, and he has a separate

research effort there focused on HIV

prevention and cure.


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

Medicine in the Department of Pulmonary and

Critical Care at UCSF. After a clinical fellowship

in pulmonary and critical care medicine at UCSF,

he received research training in immunology

and immune tolerance at UCSF. Dr. Shum leads

a translational research program that focuses on

understanding the pathogenesis of pulmonary

fibrosis in the setting of autoimmune disease through

in-depth analyses of patients and mechanistic

studies in animal models. Through his work he

identified a novel lung-specific antigen targeted

in patients with autoimmune-associated lung

TRACING THE LINK BETWEEN PF AND AUTOIMMUNITY

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.

disease that can be used as a biomarker

to detect patients with lung autoimmunity.

His laboratory recently helped discover

a novel Mendelian syndrome of auto-

immunity manifested by lung fibrosis and

joint disease coined the COPA syndrome,

based on the gene that is mutated in this

disorder. Through his research Dr. Shum

hopes to uncover diagnostic and inter-

ventional targets that will ultimately lead

to biomarkers and therapies that will

directly impact patient care.

Almost 11,000 pulmonary, critical care, sleep researchers, and allied health care

professionals attended the American Thoracic Society’s (ATS) 2015 International

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

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

Highlights of the meeting include:

• A session entitled “Advancing the Foundation for Global IPF

Clinical Research: Registries, Biorepositories, and Collaborative

Science” included presentations on the value of registries in

guiding development of standards of care, supporting

compliance with existing guidelines, and identifying correlations

between treatment strategies and outcomes.

• Another session, “That’ll Be the Day: Understanding IPF Risk

Factors and Outcomes,” compared research efforts in Korea,

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

PROOF registry in Belgium and Luxembourg.

• During the seventh annual dinner to benefit the ATS Foundation

Research Program, Marvin I. Schwarz, MD, former Chair of the

PFF Medical Advisory Board, received the 2015 Breathing for

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

Fund Awardee, received the Jo Rae Wright Award for

Outstanding Science.

• 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

are often more important to patients than clinical outcomes.

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

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

from the US Department of Defense 2015 Defense

Appropriations Act.

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

Treatment: Expanded Analyses of Pirfenidone and Nintedanib,”

addressed critical questions about the benefits of the two drugs.

Pulmonary Fibrosis a Significant Topic at ATS International Conference


researchPFF RESEARCH FUNDThe Pulmonary Fibrosis Foundation (PFF) is pleased to announce the recipients

of the 2015 Established Investigator and Junior Investigator Awards.

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

2016 GRANT CYCLEThe 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

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

in the Fall 2016 Breathe Bulletin, on the PFF website, and on all other pertinent

and print communications and/or materials.

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

• 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

ATS Foundation/PFF

• Award Recipient TBD

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.


“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 under-way 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 [email protected]

for more information.


PF COMMUNITY EVENTSOCTOBER 17 • Houston Pulmonary Fibrosis

Support Group Meeting

HOUSTON, TEXAS

OCTOBER 24 • PFF @ CHEST 2015

American College of Chest Physicians

MONTREAL, CANADA

NOVEMBER 2 • Simmons Center for Interstitial

Lung Disease IPF Support Group Meeting

PITTSBURGH, PENNSYLVANIA

NOVEMBER 10 • LV-IPF Support Group Meeting

EASTON, PENNSYLVANIA

NOVEMBER 12–14

Pulmonary Fibrosis Foundation

WASHINGTON DC

2015 CALENDAR

TEAM PFF EVENTS

OCTOBER 2 • Boston-Providence ILD

Collaborative Presents: A Symposium for

Those Living with IPF

BOSTON, MASSACHUSETTS

OCTOBER 5 • IPF World Week

AMA Fuori dal Buio

WORLDWIDE

OCTOBER 9 • Pilot Managing Patients

with IPF – Case-Based Symposium

TUCSON, ARIZONA

OCTOBER 10 • Global PF Awareness Day

at Piedmont Atlanta Hospital

ATLANTA, GEORGIA

OCTOBER 13 • LV-IPF Support Group Meeting


NOVEMBER 21 • Houston Pulmonary Fibrosis

Support Group Meeting

HOUSTON, TEXAS

DECEMBER 2 • #GivingTuesday

VIRTUAL

DECEMBER 7 • Simmons Center for Interstitial

Lung Disease IPF Support Group Meeting Annual

Holiday Party

PITTSBURGH, PENNSYLVANIA

DECEMBER 8 • LV-IPF Support Group Meeting


DECEMBER 11 • Stress and Relaxation Workshop

SOUTH MIAMI, FLORIDA

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

a Cure for PF… Because Breathing Matters

HOLLAND, INDIANA

OCTOBER 9 • Bowling for Pulmonary Fibrosis!

STERLING HEIGHTS, MICHIGAN

OCTOBER 11 • The Newport and Walt Disney

World Marathons

NEWPORT, RHODE ISLAND

OCTOBER 18 • Breathe Easy Visual Arts

Competition and Exhibition

PHILADELPHIA, PENNSYLVANIA

OCTOBER 29 • Philadelphia Flyers Pulmonary

Fibrosis Awareness Night

PHILADELPHIA, PENNSYLVANIA

DECEMBER 12 • Points for Pulmonary Fibrosis

MAGNOLIA, OHIO

View a current list of events at

www.pulmonaryfibrosis.org/get-involved/attend-an-event

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).


*EXECUTIVE COMMITTEE

BOARD MEMBERS

Michael C. Henderson* CHAIR

Kathleen O. Lindell, PhD, RN* VICE CHAIR

David McNinch* VICE CHAIR

Dave Steffy* TREASURER

Patti Tuomey, EdD PRESIDENT AND CHIEF

EXECUTIVE OFFICER

Joseph Borus, Esq.

George Eliades, PhD

Jennifer A. Galvin, MD

Thomas E. Hales

Daniel M. Rose, MD*

Stephen A. Wald, PhD

PFF TEAM

OFFICERS

Patti Tuomey, EdD PRESIDENT AND CHIEF EXECUTIVE OFFICER

Scott Staszak CHIEF OPERATING OFFICER

Gregory P. Cosgrove, MD CHIEF MEDICAL OFFICER

SENIOR ADVISOR

Daniel M. Rose, MD

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

Harold R. Collard, MD SENIOR MEDICAL ADVISOR

CHAIR, RESEARCH ADVISORY FORUM

Kerrie Trebonsky VICE PRESIDENT, FINANCE

Michelle Michael VICE PRESIDENT,

MARKETING AND COMMUNICATIONS

Michelle Clayton INTERIM VICE PRESIDENT,

DEVELOPMENT

Zoë D. Bubany VICE PRESIDENT, BOARD AND

EXTERNAL RELATIONS

Rex Edwards VICE PRESIDENT, PFF CARE CENTER

NETWORK AND PFF PATIENT REGISTRY

Jeri Webb ASSOCIATE VICE PRESIDENT,

EXTERNAL RELATIONS

STAFF

Patrick Belics

Jennifer Bulandr

Daeshawna Cook

Mayra Diaz

Eirill Falck

Courtney Firak

Sheena Kelly

Sammantha Marks

Jennifer Mefford

Amanda B. Miller

Angela Perillo

Réjane Pierre

Anil Pirbhai

Andrea Smith

MEDICAL ADVISORY BOARD

Jesse Roman, MD* CHAIR

Kevin K. Brown, MD* PAST CHAIR

Marvin I. Schwarz, MD PAST CHAIR

Andrew H. Limper, MD CHAIR, SCIENTIFIC ADVISORY

COMMITTEE

Luca Richeldi, MD, PhD* INTERNATIONAL WORKING GROUP

CHAIR

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

CHAIR

Timothy S. Blackwell, MD*

Jeffrey T. Chapman, MD

Rany Condos, MD

Aryeh Fischer, MD

Christine Kim Garcia, MD, PhD

Andreas Günther, MD*

Susan S. Jacobs, RN, MS

Naftali Kaminski, MD*

David W. Kamp, MD*

Martin Kolb, MD

Joseph A. Lasky, MD*

Kathleen O. Lindell, PhD, RN*

James E. Loyd, MD*

David A. Lynch, MD*

Fernando J. Martinez, MD, MS*

Imre Noth, MD

Ralph J. Panos, MD

Ganesh Raghu, MD

David A. Schwartz, MD*

Moisés Selman, MD

Patricia J. Sime, MD*

Charlie Strange III, MD*

Andrew M. Tager, MD

Janet Talbert, MS, CGC

Eric White, MD

The Pulmonary Fibrosis Foundation

has a four-star rating from Charity Navigator

and is a Better Business Bureau

accredited charity. *SCIENTIFIC ADVISORY

COMMITTEE

ACCREDITEDCHARITY

give.org


www.pulmonaryfibrosis.org

register now!WASHINGTON DC

contact [email protected] AVAILABLE.

tis the season for giving!www.pulmonaryfibrosis.org/donate

PLEASE CONSIDER MAKING YOUR YEAR-END GIFT TO THE PFF.

The Pulmonary Fibrosis Foundation has a four-star rating from Charity Navigator

and is a Better Business Bureau accredited charity.

NOVEMBER 12–14, 2015

DON’T MISS YOUR CHANCE TO ATTEND

Documents

Breathe Bulletin Fall 2015