Breathe Bulletin Spring 2015

SPECIAL INTEREST

PFF INITIATIVES EXPAND

04 PFF’s Medical Team Expands as the Foundation Develops

07 Join Us for PFF Summit 2015

08 Faculty / Program

11 Poster Presentation

12 CCN More Than Doubles with 12 New Sites

14 PFF Programs Update

REGULAR FEATURES

COMMUNITY ENGAGEMENT

16 September is Global Pulmonary Fibrosis Awareness Month

18 PFF Advocates Raise Funds and Awareness

18 Julie Halston and Ralph Howard

19 Nick DeVito

20 Colleen and Martin Attwell

21 Cheryl and Larry Runyon

22 Spotlight on Philanthropy: Giving Back and Raising Awareness

ADVOCACY / RESEARCH

24 Leanne Storch Support Group Fund Supports Free Clinic…and More

26 PFF Research Awards Help Investigators Make New Inroads into Understanding PF

PFF NEWS

28 Broadway Belts —Turning Talents Toward a Pulmonary Fibrosis Cure

30 2015 Calendar

in this issue

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BREATHE BULLETIN VOLUME 15 | ISSUE 01 SPRING 2015

COVER IMAGE: iSTOCK.COM/4KODIAK

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

KE

VIN

ALV

EY

LETTER FROM OUR CEO

DEAR FRIENDS,In this issue of the Breathe Bulletin there are

a number of very interesting and timely articles.

I would like to highlight a few items.

As we mentioned in the previous Breathe Bulletin,

two new therapies (Esbriet® and Ofev®) were approved

by the US Food and Drug Administration (FDA) last

October. This accomplishment is a true milestone

and was the result of a tremendous joint effort by the

Pulmonary Fibrosis Foundation, patients, physician

researchers, the FDA, and industry. As we recently

announced (and is also discussed in this issue of the

Bulletin), we expanded the PFF Care Center Network

(CCN) to 21 centers throughout the United States.

The CCN, combined with the implementation of the

PFF Patient Registry, will serve to foster education,

awareness, and research. With continued collaboration

in the PF community, the CCN and PFF Patient

Registry will help identify additional therapies and in

turn benefit more people living with pulmonary fibrosis.

Please mark your calendars for November 12–14,

which is when the PFF Summit will take place in

Washington, DC. Much important information is

disseminated at the conference. The Summit is a unique

forum providing researchers, clinicians, patients, and

caregivers from around the world an opportunity to

interact and learn from many prominent thought leaders

in the PF community. The ultimate goal of the Summit

is to foster collaboration that will enhance patient care

and stimulate research that will lead to better treatments.

Everyone who has attended the two previous events

found them to be extremely rewarding and illuminating.

The Foundation has always had a deep commitment

to advance and provide funding for patient and care-

giver support groups. In 2012, we initiated the Leanne

Storch Support Group Fund to provide grants to support

groups. Through generous funding in part from

Boehringer Ingleheim, we will be able to dramatically

increase the number of grants that we will now award.

These grants can be utilized to host educational events,

start a new group, or fund other related support group

activities. In this issue of the Bulletin, there is a very

inspiring story of how one grant was used to support

a free PF clinic in San Antonio.

The Foundation is extremely grateful for all the

support we receive from the PF community. In this issue

a number of fundraising events are highlighted. Some

of these took place during Global Pulmonary Fibrosis

Awareness Month — which was an unbelievable success —

while many others occur throughout the year. If you

would like to organize you own event, a number of

ideas are discussed in this issue and also information is

provided on how the Foundation can assist you. There

is nothing more rewarding than conducting a successful

event and also increasing disease awareness at the

same time.

We are deeply indebted to all those who support us

with their time, resources, and financial commitment.

Your support is essential for us to continue to expand

the many educational, patient and caregiver support, and

research programs at the Foundation, so that we may

be able to one day eradicate this deadly disease.

With my warmest regards,

DANIEL M. ROSE, MD

Chief Executive Officer

03BREATHE BULLETIN | SPRING 2015

PFF’S MEDICAL TEAM EXPANDS AS THE FOUNDATION DEVELOPS

Medical Advisory Board The Medical Advisory Board (MAB), comprised of health care professionals

and research scientists with expertise in pulmonary fibrosis (PF), provides

knowledge and guidance to the Foundation. As the Foundation has developed

new initiatives, the responsibilities and functions of the MAB have also increased.

“The PFF is growing so much that we now have the

ability to tackle problems in a more sophisticated way,”

Dr. Roman explained. “Having committees and working

groups continuously addressing issues important to the

organization ensures we move forward more significantly

between annual meetings. It also gives more people

a chance to bring their expertise to specific issues and

then bring their recommendations to the larger group.”

ANDREW LIMPER, MD (Professor of Medicine,

Division of Pulmonary and Critical Care Medicine, Mayo

Clinic, Rochester, MN), chairs the Research Advisory

Committee (RAC), which oversees the peer review

evaluations for the research grant program and poster

selection at the PFF Summit. The Committee’s primary

goal is to supervise the Foundation’s “Research Fund to

Cure PF” (to donate visit www.pulmonaryfibrosis.org/

donate). The RAC also provides guidance to the Founda-

tion for approval of other research grants.

Several years ago, the Research Advisory Committee

began supervising the Foundation’s research funding.

“As the PFF grew and evolved, we felt it was time to give

strength to the research program,” Dr. Roman said.

The Committee delineates well-defined criteria and a

formal review process for grant selection consistent with

professional research standards. Investigators who have

been funded by the PFF have been “very successful,”

Dr. Roman reported. He added, “many of the early

investigators have received continued funding for their

PFF projects from other organizations.” (See page 26 for

a report from several current PFF research awardees.)

As the Pulmonary Fibrosis Foundation (PFF) grows and expands its programs, it has also

been necessary to increase the Foundation’s medical staff and advisors. This past year, the

Medical Advisory Board (MAB) welcomed a new leadership team and added several new

members. Also, a number of key PF experts joined the Foundation’s medical staff.

Building on the hard work and dedication of his

predecessor, Kevin K. Brown, MD, the MAB’s new

Chairman is JESSE ROMAN, MD (former Chairman

of the MAB’s Research Advisory Committee). Dr. Brown

now serves as Chairman emeritus.

Dr. Roman is Professor of Medicine,

Pharmacology, and Toxicology; Chairman,

Department of Medicine; Chief, Division

of Pulmonary, Critical Care, and Sleep

Disorders Medicine; and Distinguished

University Scholar, at the University of

Louisville. He was previously Professor of

Medicine and Director of the Division of Pulmonary,

Allergy, and Critical Care Medicine at Emory University.

The members of the MAB hold their annual meeting

each May in conjunction with the American Thoracic

Society meeting. The MAB’s work is divided among

several groups: the Research Advisory Committee, the

Education Working Group, and the International

Working Group.

04 WWW.PULMONARYFIBROSIS.ORG

GREGORY P. COSGROVE, MD

Chief Medical Officer

As Chief Medical Officer,

Dr. Cosgrove oversees medical

affairs and serves as the primary

medical consultant for the PFF.

He advises in defining priorities,

creating new initiatives, and

enhancing existing programs for

the Foundation. Dr. Cosgrove also serves as the official

medical spokesperson for the PFF, briefing the media

on PF issues in order to help increase disease awareness

and inform individuals on how to find appropriate

medical care. Dr. Cosgrove has had a longstanding

relationship with the Foundation. From 2010 to 2014

he served on the Medical Advisory Board and on

the Research Advisory Committee. Additionally,

Dr. Cosgrove was Co-Chair of the PFF Summit 2013:

From Bench to Bedside.

Dr. Cosgrove is currently Associate Professor of

Medicine in the Division of Pulmonary and Critical

Care Medicine at the University of Colorado School of

Medicine. His research focuses on the fibroproliferative

response of the lung following injury and investigating

novel therapies for the treatment of interstitial lung

disease. Dr. Cosgrove sees patients in the Interstitial

Lung Disease Clinic at National Jewish Health in

Denver, CO.

The Education Working Group is chaired by

JEFFREY J. SWIGRIS, DO, MS (Associate Professor,

Department of Medicine, Division of Pulmonary,

Critical Care and Sleep Medicine, National Jewish

Health, Denver, CO). The group advises the PFF on

the development and implementation of patient and

professional educational activities and materials.

This includes the PFF Summit, webinars, symposia,

brochures, newsletters, bulletins, press releases, and

website content. The Chair of the Education Working

Group also supports the PFF Summit. “Right now this

group is focused on creating the educational agenda

for the upcoming PFF Summit,” Dr. Roman said.

The International Working Group, chaired by

LUCA RICHELDI, MD, PHD (Professor of Respiratory

Medicine, Chair of Interstitial Lung Disease, University

of Southampton, England), advises the PFF on the

development of international partnerships, international

patient education activities, support groups, regional

cultural issues, and research activities. “We hope to

gather all the groups working on PF across the world

to use their collective strength,” Dr. Roman said. “Our

main job right now is to strengthen connections among

PF efforts in different nations.”

PFF Medical Team ExpandsTo maximize its effectiveness, the PFF has expanded its medical staff to

include several important thought leaders in the PF community. These

outstanding individuals share the Foundation’s vision to improve the

quality of life for those affected by PF and to ultimately find a cure. These

physicians help oversee many of the Foundation’s valuable and significant

programs, including the PFF Summit, the PFF Care Center Network

(CCN), the PFF Patient Registry, the PFF Disease Education Webinar

Series, and the PFF Patient Communication Center.

continued on next page >


HAROLD R. COLLARD, MD

Senior Medical Advisor, Research Advisory Forum

Chair, PFF Summit 2015 Chair

Dr. Collard joined the PFF as a

Senior Medical Advisor effective

January 2015. He has a long

history of working closely with

the PFF, serving on its medical

and research advisory boards

for many years, developing the

PFF Care Center Network (CCN) and the PFF Patient

Registry, and helping organize the PFF’s first Summit

in 2011.

In his new role, Dr. Collard will provide strategic

guidance and oversight to the PFF, with particular

attention to the development of the PFF Research

Advisory Forum. The Research Advisory Forum will

bring together patients, academic researchers, industry

leaders, and government representatives to promote and

leverage PFF resources — in particular the CCN and

Registry — for the advancement of research efforts

worldwide.

Additionally, Dr. Collard is the Chair of the PFF

Summit 2015, where he is responsible for overseeing

the clinical, scientific, and educational content of the

conference. Working with PFF leadership, Dr. Collard

will work to ensure that the diverse needs and interests

of the PF community are reflected in the choice of topics

and speakers, and that the core mission of the Summit

is achieved.

Dr. Collard is Associate Professor of Medicine,

Division of Pulmonary and Critical Care Medicine, and

Director of the Interstitial Lung Disease Program,

University of California, San Francisco (UCSF) School

of Medicine. His primary interest is in the management

of patients with interstitial lung disease, including how

best to diagnose and treat interstitial lung disease and

how the condition impacts quality of life.

KEVIN R. FLAHERTY, MD, MS

Steering Committee Chairman, PFF Care Center

Network and PFF Patient Registry

As Chair of the Steering Committee of

the PFF Care Center Network and the PFF

Patient Registry, Dr. Flaherty helps guide

the development and implementation of

these two important initiatives that will

improve the quality of life for those affected

by PF. The CCN includes both academic

medical centers and community-based practices that have

proven experience and expertise in the care of patients

with fibrotic lung disease and that utilize a multidisci-

plinary approach to deliver comprehensive patient care.

The Registry is a collection of patient information for use

by qualified investigators to better understand the fibrotic

lung diseases and help to develop more effective therapies.

With a background in biostatistics and clinical studies,

Dr. Flaherty is uniquely qualified to help researchers fully

leverage data gleaned from the Registry.

Dr. Flaherty is Professor of Medicine in the Division

of Pulmonary and Critical Care Medicine, Department

of Internal Medicine, at the University of Michigan

Health System in Ann Arbor, MI.

DAVID J. LEDERER, MD, MS

Senior Medical Advisor, Education and Awareness

Dr. Lederer liaises with the PF community

to help make complex and confusing

information about PF less difficult to

understand. Working with Patient Relations

and Medical Affairs, he produces and

reviews content for PFF educational materi-

als and responds to medical inquiries

submitted to the PFF Patient Communication Center.

As the PFF “interpreter” of the ever-changing pulmonary

fibrosis landscape, he is a resource for Foundation staff,

patients, caregivers, and families providing the most

up-to-date and accurate information. Dr. Lederer is also

an official spokesperson for the PFF, addressing current

issues including the importance of a timely, accurate

diagnosis and the value of high quality patient care.

Dr. Lederer is Associate Professor of Medicine and

Epidemiology in the Division of Pulmonary, Allergy,

and Critical Care Medicine at Columbia University

Medical Center in New York City. He specializes in the

care of adults with interstitial lung disease and those

who have undergone lung transplantation. Dr. Lederer

is a principal investigator of the National Institutes of

Health-funded MESA Lung Fibrosis Study.


IMPORTANT DATES

Registration Opens

April 28, 2015

Call for Abstracts

June 1–August 1, 2015

Exhibitor Deadline

October 1, 2015

Hurry, space is limited!

Hotel Group Rates Deadline

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

Info/Registration

888.733.6741 or +1 312.587.9272

[email protected]

www.pffsummit.org

PROGRAM AT A GLANCE

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.

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.

Sessions for Professionals

10:30 a.m.–4:45 p.m.

Sessions for Patients and Caregivers

10:30 a.m.–2:45 p.m.

Cocktail Hour / Networking Dinner

6:30 p.m.–10:00 p.m.

SATURDAY, NOVEMBER 14

Registration and Continental Breakfast

7:00 a.m.–8:15 a.m.

Plenary Session

8:15 a.m.–10:00 a.m.

Sessions for Professionals

10:30 a.m.–5:00 p.m.

Sessions for Patients and Caregivers

10:30 a.m.–3:00 p.m.

CONFERENCE VENUE

AND HOTEL ACCOMMODATIONS

JW Marriott Washington, DC

1331 Pennsylvania Avenue, NW

Washington, DC 20004

Phone: 202.393.2000

www.marriott.com/hotels/travel/wasjw-jw-

marriott-washington-dc/

Guest Room Block Rates

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

Reservations

To make a reservation, call the JW Marriot

Washington, DC at 800.393.2503 or +1 202.393.2000

and reference the PFF Summit 2015

Deadline for group rates:

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

“Customized breakout sessions intermixed with conference-wide plenary sessions will set the stage for audience participation and interaction between all attendees.”HAROLD R. COLLARD, MD / SUMMIT CHAIR


plenary sessionsBoth sessions are open to all attendees, providing interactive discussions

of these important topics.

FACULTYAS OF 03.06.15


PFF SUMMIT CHAIR

JOAO ALBERTO M. DE ANDRADE, MD

WILLIAMSON BRADFORD, MD, PHD

KEVIN K. BROWN, MD


SONYE K. DANOFF, MD, PHD

JERRY EU, MD


CHRISTINE KIM GARCIA, MD, PHD

CHRIS GARVEY, FNP, MSN, MPA, FAACVPR

KEVIN F. GIBSON, MD

DEBORAH GILLMAN, PHD

MARILYN K. GLASSBERG, MD

JANE HARRISON, LCSW, CCTSW

ERICA L. HERZOG, MD, PHD

ANNE E. HOLLAND, MD

SUSAN S. JACOBS, RN, MS

TALMADGE E. KING, MD

MARYL KREIDER, MD, MSCE

LISA LANCASTER, MD

JOSEPH A. LASKY, MD


JOYCE LEE, MD

ANDREW H. LIMPER, MD

KATHLEEN O. LINDELL, PHD, RN

DAVID A. LYNCH, MD

FERNANDO MARTINEZ, MD, MS

A. BRUCE MONTGOMERY, MD

STEVEN D. NATHAN, MD

RAFAEL J. PEREZ, MD

PETER J. PITTS

GANESH RAGHU, MD

LUCA RICHELDI, MD, PHD

JESSE ROMAN, MD

IVAN O. ROSAS, MD

DANIEL M. ROSE, MD

CHRISTOPHER J. RYERSON, MD

CHRIS D. SCHUMANN, MS, RCEP, CES

MARVIN I. SCHWARZ, MD

JEFFREY J. SWIGRIS, DO, MS

ANDREW M. TAGER, MD

TIMOTHY P. M. WHELAN, MD

View a current list at www.pffsummit.org.

SUMMIT EDUCATION / ORGANIZING COMMITTEE


COMMITTEE CHAIR

ZOË D. BUBANY



SUSAN S. JACOBS, RN, MS

DOLLY KERVITSKY, CRT, CCRC


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

program

FRIDAY AM

THE FUTURE OF DRUG DEVELOPMENT IN PF

This keynote lecture on drug development in PF is followed by a panel discussion

with academics, industry representatives, and patients.

SATURDAY AM

COLLABORATIVE NETWORKS AS TOOLS FOR IMPROVING CLINICAL CARE

Pat Furlong (President and CEO, Parent Project Muscular Dystrophy) delivers

this keynote lecture on the power of collaborative networks to advance clinical

care for patients with rare diseases. The keynote is followed by a panel discussion

with academics, industry representatives, and patients.


FRIDAY

Friday’s sessions for professionals will focus on

the science of pulmonary fibrosis (PF).

TRANSLATIONAL SCIENCE: THE PROMISE

OF MOLECULAR AND GENETIC BIOMARKERS

Biomarkers are an exciting and tremendously promising

area of research in PF. This session will feature talks

from leading translational scientists outlining the

progress being made and challenges faced in biomarker

development. Topics will include the use of biomarkers

for diagnosis and prognosis in PF, and the central role

of biomarkers in exploring the concept of precision

medicine.

BASIC SCIENCE: LUNG REMODELING

AND REGENERATION

Session participants will discuss the current status

of scientific knowledge regarding one of the central

pathobiological issues in PF — structural remodeling

of the lung. Leading scientists in the field will address

the current state of knowledge in this area and the

potentially revolutionary impact of regenerative

medicine on the future treatment of PF.

CLINICAL SCIENCE: PATIENT CENTERED END-

POINTS: SYMPTOMS AND FUNCTIONAL STATUS

A central goal of patients with PF is to feel better and

do more. Unfortunately, most studies to date have failed

to demonstrate an impact on these important outcomes.

This session will feature top clinical researchers discuss-

ing the importance and the challenges of measuring

patient-centered outcomes such as symptoms and

functional status in PF trials.

SATURDAY

Saturday’s sessions for professionals will focus on

the clinical care of PF.

CLINICAL CARE: NEW AND EVOLVING

TREATMENT STRATEGIES

This session will focus on the current and future

pharmacological treatments for patients with PF.

Clinical leaders in PF will discuss when and how to

use current pharmacological therapies, the management

of side effects and complications of PF, and review

potential pharmacological therapies currently being

studied in clinical trials.

CLINICAL CARE: COMPREHENSIVE CARE —

BEYOND PHARMACOLOGICAL THERAPIES

Appropriate management of patients with PF includes

much more than pharmacotherapy for PF. It takes a team

of providers to deliver comprehensive care. This session

will involve a diverse group of expert providers discussing

the impact of managing comorbidities and of interven-

tions like exercise, education, and life planning.

CLINICAL CARE: MULTIDISCIPLINARY DIAGNOSIS

At the core of the management of PF patients is the

multidisciplinary team discussion. This process is best

learned through participation, and so this session will

use case presentations to illustrate the intellectual and

operational requirements of effective multidisciplinary

team discussion. Cases will be presented to an expert

pulmonologist, radiologist, and pathologist. Audience

members will be engaged in the discussion of diagnosis

and management recommendations.

professional sessions

CME/CE INFORMATION

CME/CE activity details are forthcoming.

Visit www.pffsummit.org for the latest information.


FRIDAY

PULMONARY FIBROSIS: WHAT AND WHY

Many patients and caregivers struggle to understand PF, what can cause it, and what it

means for the future. This session addresses these issues with the goal of attendees leaving

with a clear understanding of PF and how it affects lung function — the most common

causes of PF — and how physicians try to provide guidance regarding prognosis and the

goals of therapy.

PULMONARY FIBROSIS: MANAGEMENT STRATEGIES I

Once a patient is diagnosed with PF, there are important decisions to be made regarding the

comprehensive approach to management. This session will review the key components of

this initial therapy including choice of pharmacological therapy, non-pharmacological inter-

ventions such as exercise, education and oxygen, and the treatment of common comorbidities.

SATURDAY

PULMONARY FIBROSIS: MANAGEMENT STRATEGIES II

This session will continue the discussion of the management of PF with a review of issues

confronted in a more advanced disease state. These include symptom-focused management,

lung transplantation, and palliative/end of life care. It is hoped that attendees will leave

this session with an appreciation for and realistic understanding of these interventions

and their important role in comprehensive management.

PATIENT CENTERED RESEARCH IN PULMONARY FIBROSIS

There is a clear need for continued research in PF, and a renewed focus on ensuring that

questions being addressed are the ones most relevant to all stakeholders, most centrally,

patients. This session will discuss patient goals and priorities for research and how

to achieve them.

patient and caregiver sessions

program

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

THURSDAY PRE-CONFERENCE INTERACTIVE SESSION

TAKING CARE OF YOURSELF — SHARED HEALTH CARE DECISION MAKING

Shared health care decision making is a collaborative

process that allows patients and their clinicians to make

decisions together, taking into account scientific evidence,

benefits versus risks, as well as the individual patient’s

needs. It has been shown to be associated with greater

patient involvement with medication decisions, adherence,

self-efficacy, self-care behaviors and patient satisfaction.

This session will begin with an introduction by

Kathleen O. Lindell, PhD, RN on the importance

of active participation by patients and caregivers in

management of their pulmonary fibrosis. This will

be followed by interactive small group sessions on

pulmonary rehabilitation, oxygen therapy, and

patient and caregiver coping skills.


CALL FOR ABSTRACTS

The Pulmonary Fibrosis Foundation (PFF) invites

academic and industry researchers to submit abstracts

of their scientific research for poster presentation at

the PFF Summit 2015: From Bench to Bedside beginning

June 1, 2015. All applicants must be registered to

attend the PFF Summit 2015 in order to be consid-

ered for presentation. The call for abstracts will

close on August 1, 2015.

Subject matter deemed appropriate for poster presenta-

tion at the PFF Summit 2015 include original ideas that

will help improve the understanding of pulmonary

fibrosis in the following areas:

• Basic Research

• Translational Research

• Clinical Research

• Social Science/Quality of Life Research

A panel from the PFF’s Research Advisory Committee

(RAC) will review all academic abstracts. Notification

of the Committee’s decision will be completed by

September 1, 2015.

Industry posters are not subject to peer review. Space can

be reserved by submitting an abstract and acceptance

is based on a first-come, first-serve basis. Space allotted

will be confirmed by September 1, 2015.

PRESENTATION AND RECOGNITION

The Poster Presentation will take place on Thursday, November 12

from 5:00 p.m. to 8:00 p.m. in conjunction with the Welcome Reception.

Presenting authors are expected to be present at their posters between

5:00 p.m. and 7:00 p.m. Academic posters will be evaluated by the RAC

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

the Networking Dinner on Friday, November 13. The top three poster

presenters will also be selected to discuss their research during one of the

three individual sessions for professionals on Friday, November 13.

Travel awards will be granted to the top five presenting authors, which

will include reimbursement for airfare up to $500 for domestic travel, or

$1,000 for international travel, 2 nights lodging at the JW Marriott, and

up to $100 for ground transportation. Note: Industry posters are exempt

from scoring and will not be considered for awards.

• First place: $1,500 and travel award

• Second place: $1,000 and travel award

• Third place: $500 and travel award

• Honorable mentions (2): travel award

Learn more about the call for abstracts

and poster presentation at www.pffsummit.org/

posters.html.

posterpresentation

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

NICK DEVITO / PFF ADVOCATE, PETE DEVITO MEMORIAL FOUNDATION

The Welcome Reception and Poster Presentation are made possible by our presenting sponsors,

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


Less than two years after its formation, the PFF Care Center Network (CCN) has more than doubled

the number of sites. Each CCN site brings together multiple medical disciplines that will facilitate

the diagnosis and enhance the treatment for pulmonary fibrosis (PF) patients.

The PFF Care Center Network sites will also collect

data regarding patient care and outcomes related to

different treatment plans through their participation

in the PFF Patient Registry. The PFF Patient Registry

is a collaborative effort that will bring together multiple

stakeholders including patients, health care providers,

and researchers. The Registry is an electronic database

of patient information that will be de-identified (made

anonymous) and independently managed by a data-

coordinating center (DCC). The DCC will aggregate

each patient’s information, which will be collected in

a consistent manner from the designated Registry sites.

PF researchers — particularly members of the CCN —

will then analyze data from the Registry in order to

better understand the disease and develop more

effective care strategies and therapies.

The CCN sites are selected through an objective

review procedure. The individuals who carefully

review the site applications include members of the PFF

Board of Directors, the PFF Medical Advisory Board,

the PFF Care Center Network, and the PFF Patient

Registry Steering Committee. “When selecting sites

to add to the PFF Care Center Network, we consider a

center’s specific programs and its geographic location in

order to best serve the needs of the broader pulmonary

fibrosis community,” said Kevin R. Flaherty, MD, MS,

Chairman of the PFF Care Center Network and the

PFF Patient Registry Steering Committee.

“The new centers we selected provide high quality

patient care and an individualized approach to

treatment in accordance with best, evidence-based

recommendations,” Dr. Flaherty continued. “We

welcome these new centers into the program and look

forward to continuing to expand the network in the

coming year.”

CCN MORE THAN DOUBLES WITH 12 NEW SITES

With the addition of 12 sites, the CCN now includes 21

medical centers in 20 states. Launched in 2013, the CCN

connects leading medical centers with specific expertise

in treating fibrotic lung diseases that are often difficult

to diagnose, complicated to manage, and are usually

associated with survival rates of less than five years.

“As the leading advocate for the pulmonary fibrosis

community, we are dedicated to advancing the care of

people living with this deadly disease, and this starts

with providing greater access to experienced care teams,”

said Gregory P. Cosgrove, MD, Chief Medical Officer

of the PFF. “Working together, institutions within the

network will identify and share best practices, which

will foster better patient care and ultimately enable more

institutions that embrace these practices to be PFF Care

Center Network sites.”

The CCN engages medical centers that use a multi-

disciplinary approach to deliver comprehensive patient

care. These specialized care teams include individuals

with expertise in pulmonary medicine, rheumatology,

radiology, pathology, gastroenterology, and thoracic

surgery. This multipronged, collaborative approach is

critical to managing a complex disease like pulmonary

fibrosis and ensuring individuals receive an accurate

diagnosis, obtain quality clinical care, and acquire

important support services.


UCSF Interstitial Lung Disease Program

SAN FRANCISCO

University of Alabama at Birmingham*

BIRMINGHAM

University of Chicago Pulmonary Clinic

CHICAGO

University of Louisville School

of Medicine

LOUISVILLE

University of Miami Miller School

of Medicine*

MIAMI

University of Michigan Health System

ANN ARBOR

University of Pennsylvania*

PHILADELPHIA

University of Pittsburgh

Dorothy P. & Richard P. Simmons

Center at UPMC

PITTSBURGH

Vanderbilt University Medical Center

NASHVILLE

Washington University School of

Medicine in St. Louis*

ST. LOUIS

Yale School of Medicine

NEW HAVEN

“We are honored that the Pulmonary Fibrosis Foundation has recognized the quality of our programs and the expertise our physicians have in treating patients with pulmonary fibrosis.” DR. JOSEPH LASKY / JOHN W. DEMING, MD CHAIR OF

INTERNAL MEDICINE AND CHIEF OF PULMONARY DISEASES,

CRITICAL CARE AND ENVIRONMENTAL MEDICINE,

TULANE UNIVERSITY SCHOOL OF MEDICINE

BECOME A CARE CENTER NETWORK SITEThe application process to become a PFF Care

Center Network site is now open.

The PFF Care Center Network Selection Committee

will consider applications for inclusion in the Network

for facilities that meet the established guidelines for

patient care, teaching, and research, and that fulfill

geographic and consumer need.

The selected sites will be announced during PFF

Summit 2015 in November.

For more information or questions, contact the

PFF Patient Communication Center at 844.TalkPFF

(844.825.5733) or [email protected].

Visit www.pulmonaryfibrosis.org/medical-community/

pff-care-center-network to apply.

pulmonaryfibrosis.org

230 East Ohio Street, Suite 304, Chicago, Illinois 60611 844.TalkPFF (844.825.5733) [email protected]@pulmonaryfibrosis.org

Facebook.com/PulmonaryFibrosisFoundation Twitter.com/PFFORG Linkedin.com/company/pulmonary-fibrosis-foundation Instagram.com/PFFORG

The University of Kansas HospitalKansas City

Tulane University School of MedicineNew Orleans

UCSF Interstitial Lung Disease ProgramSan Francisco

University of Alabama at BirminghamBirmingham

University of Arizona Interstitial Lung Disease Program at the University of Arizona Medical Center - University Campus in TucsonTucson

University of Chicago Pulmonary ClinicChicago

University of Louisville School of MedicineLouisville

Inova Fairfax Medical CampusFalls Church

Interstitial Lung Disease Clinic at University of Washington Medical CenterSeattle

Mayo Clinic in Rochester, Minn.Rochester

Medical University of South CarolinaCharleston

National Jewish HealthDenver

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

Piedmont HealthcareAtlanta

University of Miami Miller School of MedicineMiami

University of Michigan Health SystemAnn Arbor

University of PennsylvaniaPhiladelphia

University of Pittsburgh Dorothy P. & Richard P. Simmons Center at UPMCPittsburgh

Vanderbilt University Medical CenterNashville

Washington University School of Medicine in St. LouisSt. Louis

Yale School of MedicineNew Haven

*Please note there are two locations for this PFF Care Center Network site.

H

HH

H

H H

H

H

HH H

H

H

H

HH

HH

H

HHH

Inova Fairfax Medical Campus*

FALLS CHURCH

Interstitial Lung Disease Clinic

at University of Washington

Medical Center

SEATTLE

Mayo Clinic in Rochester, Minn.*

ROCHESTER

Medical University of South Carolina*

CHARLESTON

National Jewish Health

DENVER

New York-Presbyterian /Columbia

University Medical Center and

New York-Presbyterian /Weill Cornell

Medical Center*

NEW YORK

Piedmont Healthcare*

ATLANTA

The University of Arizona Interstitial

Lung Disease Program at the

University of Arizona Medical Center –

University Campus in Tucson*

TUCSON

The University of Kansas Hospital*

KANSAS CITY

Tulane University School of Medicine*

NEW ORLEANS

PFF CARE CENTER NETWORK SITES

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


PF Education Made Easy — PFF Disease Education Webinar SeriesLooking for an easy way to educate yourself and

others about pulmonary fibrosis (PF)? The PFF Disease

Education Webinar Series is a versatile tool for support

group meetings, family gatherings, or individuals to learn

about the disease — the archived presentations are

available any time you want them.

Offered monthly, webinars in the Series allow the

PF community to learn from, connect with, and pose

questions to leading PF specialists. Webcasts presented

earlier this spring included “Occupational and Environ-

mental Pulmonary Fibrosis” and “Pulmonary Hyper-

tension and Pulmonary Fibrosis.” If you can’t attend the

live presentations, past webinars are available to view

24/7 on the PFF website.

This year, all webinar topics were selected based on

viewer surveys, which were conducted after the conclusion

of each webinar during the 2014 series.

In addition to monthly presentations, a new, quarterly

“Ask a Doc” webinar has been added to the Series which

enables anyone to ask a member of the PFF medical team

questions about living with the disease.

Visit www.pulmonaryfibrosis.org/webinars to access

archived webinars, view the schedule for upcoming

presentations, including “Ask a Doc,” and to register

and submit questions.

PFF PROGRAMS

PFF Ambassador Program Gains MomentumSharing a personal story is an important way to make

an impact. The national PFF Ambassador program,

launched in July 2014, brings together IPF patients,

caregivers, and health care professionals with expertise

in pulmonary fibrosis (PF) to inform, engage, and

support audiences across the country.

Each PFF Ambassador team includes one patient

and/or caregiver and one health care professional.

At speaking engagements including fundraising events,

support group gatherings, and meetings with health care

organizations the Ambassador shares his or her personal

story of living with pulmonary fibrosis, while the health

care professional provides current information about

the disease. Some Ambassadors whose oxygen needs have

made it difficult to travel are even sharing their stories

on radio programs (visit bit.ly/pffradiotour).

PFF Ambassadors were featured speakers at several

spring events. PFF Ambassador Doug Jones spoke to a

packed room at a Congressional briefing on February 25,

2015 in conjunction with Rare Disease Day. On the same

day, Peter Mulliner shared his story with state legislators

in Connecticut. Two local PF support groups welcomed

Ambassadors to their meetings in March. The Naperville,

IL support group welcomed Michele Peters and Cathy

Brown, RN and the South Miami Hospital welcomed

Emmanuelle Simonet, MA, CCRP. Both meetings were

also attended by a member of the PFF staff to talk with

support group members about the work of the PFF.

To learn more about the PFF Ambassador program or

to reserve a PFF Ambassador for your next support group

meeting, education, or fundraising event, contact the

PFF Patient Communication Center at 844.TalkPFF

(844.825.5733) or [email protected].

UPDATE


The grant will also allow the Pulmonary Fibrosis Foundation to offer

additional training for support group leaders including presentations on

topics such as “group dynamics” or “discussing a death in the group.”

The newly formed Support Group Leader Steering Committee is planning

training webinars and developing a guide that will offer a year’s worth of

topics, activity suggestions, and tips for finding speakers. “We’re making it

as easy as possible to set up and run a support group,” Firak said.

As part of the support group expansion, the Leanne Storch Support

Group Fund now offers expanded funding through two separate grants:

• New Support Group Grant – $500 grant to establish a new pulmonary

fibrosis support group

• Support Group Development Grant – $750 grant to help an existing

PF support group expand and extend its impact

With the outreach activities of the PCC, “We’re building on existing

programs and creating new groups thanks to new and expanded funding,

which is critical to fulfilling the mission of the Foundation,” Firak said.

See page 24 for an update on the activities of the San Antonio PF

Support Group, a Leanne Storch Support Group Fund awardee.

PFF Support Group Leader Network: Expanding its ReachWhen the PFF Patient Communication Center

(PCC) debuted in March 2014, it was hailed

as a much-needed central information resource

for pulmonary fibrosis (PF) patients, caregivers,

family members, and health care providers. This

dedicated call center provides the most up-to-date

medical information, communicates the availability

of support services, and provides information

about other essential resources. The PCC also

offers current information on available treatments

and clinical trials.

In 2012 the PFF Support Group Leader

Network (SGLN) was created to provide support

group leaders with a forum to exchange ideas

and discuss best practices. The SGLN has been

especially valuable to individuals who may not

have the knowledge, experience, or educational

and financial resources to establish or host a

support group.

Now, through generous funding in part

from Boehringer Ingelheim, the PCC is helping

to expand the SGLN by actively reaching out to

areas without local PF support groups. Outreach

efforts are already underway, with the PCC

having identified high need areas as first points

of contact.

“In person support groups are a real game

changer when it comes to helping people live with

pulmonary fibrosis — both patients and caregivers,”

said Courtney Firak, Director of Programs.

“PCC outreach will help us more efficiently —

and effectively — share PFF materials and resources

that are essential to start and run these important

groups within the PFF Support Group Leader

Network.”


What does “global” really mean for pulmonary fibrosis (PF) awareness?Global means a person doesn’t have to explain PF to his or her family and

friends. It means primary care physicians recognize the signs and symptoms

of PF. It means more research dollars go toward developing new treatments

and a cure.

“Global” also means a widespread, shared commitment to eradicating

this disease and improving the lives of PF patients. As the Pulmonary Fibrosis

Foundation gears up for Global Pulmonary Fibrosis Awareness Month this

September, we invite you to think about ways you can help spread the message

about PF — to family, friends, health care professionals, colleagues, neighbors,

leaders in your community, and everyone else in your circle. Global is all-

encompassing. Global includes you.

WHO’S IN?Global Pulmonary Fibrosis

Awareness Month is a prime time

for action and collaboration among

all members of the PF community

and beyond. Key participants are:

• PF patients

• PF caregivers

• Family and friends of PF patients

• Family and friends of patients

who have passed away

• PFF donors

• PFF Support Group Leader

Network

• Team PFF event leaders

• PFF volunteers

• PFF social media community:

Facebook, Twitter, Instagram

• InspireSM – Online PFF Support

Community

• PFF Care Center Network

• PFF Board of Directors

• PFF Medical Advisory Board

• PFF staff

• PF advocacy organizations

around the world

• Respiratory and thoracic

societies

JOIN US IN SEPTEMBER!

In 2013 PFF Ambassador Diane Reichert (left) added a blue streak to her hair

hoping the eye-catching color would help spread the word about pulmonary fibrosis.

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

and fundraising campaign.

ONLINE TOOLBOX

www.globalPFawareness.orgAll Global Pulmonary Fibrosis Awareness Month activities can be found

at www.globalPFawareness.org. Visit the website for:

• Links to information about physician and patient educational events

• Tools for PF community members to create their own grassroots

awareness campaigns and fundraising events

• Downloadable educational materials

• PF community members’ stories and photos

Naftali Kaminski, MD

(Yale School of

Medicine Pulmonary,

Critical Care and Sleep

Medicine Section)

and Kathleen O.

Lindell, PhD, RN

(Dorothy P. & Richard

P. Simmons Center

for Interstitial Lung

Disease at University

of Pittsburgh

Medical Center) at

the International

Colloquium on

Lung and Airway

Fibrosis meeting in

Mont Tremblant,

Canada (above).


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

events, reading educational materials at www.globalPFawareness.org,

or viewing presentations in the PFF Disease Education Webinar Series

at www.pulmonaryfibrosis.org/webinars.

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

the challenge and opportunity. Start a conversation by creating your

own awareness campaign. Follow the PFF on social media and share

Global stories.

FUNDRAISE: Host your own event and donate the proceeds to support

the mission of the Pulmonary Fibrosis Foundation.

To purchase PFF lapel pins, PFF Breathe Bracelets, and other items

to help raise awareness, please visit http://bitl.ly/shoppff.

GET INVOLVED WITH TEAM PFFStart planning your own Global Pulmonary Fibrosis

Awareness event now through Team PFF. We recently

updated the Team PFF Event Leader Guide to make it

even easier to hold an event to increase disease awareness

and fundraise. To learn more, please contact Jennifer

Bulandr, Director of Community Events and Social

Media, at [email protected].

WAYS TO GET INVOLVED

• Host a luncheon or dinner

• Create a FirstGiving page to share your story

and hold a virtual fundraiser

• Donate to the PFF in lieu of favors at your baby

shower, wedding reception, bar mitzvah, etc.

• Ask your HR/Talent Director to hold a “Blue

Jeans Day” at work and donate the proceeds

• Hold a car wash in your community

• Set up a lemonade stand with your children

• Ask your workplace, school, or church to hold

a charity/PF awareness day

• Take up a collection in your neighborhood

• Hold a bake sale and donate the proceeds to

the PFF

• Plan a bowling night with friends and family

and ask them to make a donation

• Host a direct sales party such as PartyLite® or

Avon© and donate a percentage of sales

To learn more about how PFF advocates are

raising funds and awareness, see pages 18–21.

Mayor Rahm Emanuel proclaimed September 2014

Global Pulmonary Fibrosis Awareness Month in Chicago.

Mary Pat Slattery, dedicated PFF advocate, spearheaded

the effort to acquire the proclamation.

PFF Ambassador Sally McLaughlin, RN, MSN (front, left) of the

University of California, San Francisco ILD Program invited PF patients

and their loved ones to attend a San Francisco Giants baseball game

for Global Pulmonary Fibrosis Awareness Month 2014. Tickets to

the event were generously donated by the Giants.


$38

7,00

0IN THE GREEN ROOM WITH JULIE HALSTON AND RALPH HOWARDActor and comedian Julie Halston and her husband, radio anchorman Ralph Howard, have been the mainstays

of the successful benefit show, Broadway Belts for PFF!, which is held every year at Birdland in New York City.

Ralph, a pulmonary fibrosis (PF) patient, had a lung transplant. This year, Broadway Belts celebrated its

5th anniversary. In total, the event has raised more than $387,000.

Now that Broadway Belts has raised some awareness,

what’s the next step?

Julie: People are now really becoming aware of what we do,

and that’s important. But we want them to become super aware.

I have spoken with journalist and talk show host Meredith Vieira

about this; she is aware of our story. It’s starting to get onto the

radar, and the fact that these two new drugs have been approved

by the FDA for use in the US has helped raise awareness.

We’re hoping that this becomes a national conversation.

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

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

that we’re already doing, which means transplants.

Julie: The drugs can make people more comfortable, and

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

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

the thing about pulmonary fibrosis; it’s progressive and

ultimately fatal.

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

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

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

cuter than ever, to be honest.

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

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

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

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

fibrosis.” They need to start educating themselves about PF,

and they need to start asking their doctors the questions about

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

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

ask them these very specific questions.

Ralph: And people who have been diagnosed or suspect

they may have PF need to go to these centers in the PFF Care

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

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

excited about the new CCN centers.

To learn more about Broadway Belts for PFF!,

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

broadway-belts-for-pff.

How did Broadway Belts for PFF! come about?

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

Michael Kuchwara, a friend of ours who was the Associated

Press drama critic, passed away from pulmonary fibrosis.

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

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

pulmonary fibrosis.

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

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

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

It was so successful and such an amazing show that people

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

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

The ironies were staggering that someone we knew and cared

about died from the same disease that Ralph had just been

diagnosed with. It was a very bittersweet and ironic

circumstance.

How has the event grown and changed over the years?

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

and more money. The Broadway community (one of whom

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

who is also one of the most fantastic human beings on the

planet!) and the other sponsors have been so generous.

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

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

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

the TV show Masters of Sex; and Randy Graff, a Tony

Award-winning actress. We had Darlene Love the year she

was inducted into the Rock and Roll Hall of Fame.

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

CH

RIS

OW

YO

UN

G


$200,000

A DRIVE TO HONOR HIS FATHER’S LEGACYPete DeVito was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009 and passed away the following year. The Pulmonary

Fibrosis Foundation’s (PFF) Senior Medical Advisor, Education and Awareness, David J. Lederer, MD, MS, was his doctor. This year

the DeVito Memorial Foundation, established in Pete’s memory, will host its 5th Annual Golf Outing & Dinner on June 12 at the

Willow Creek Golf and Country Club in Mount Sinai, NY. Since its inception five years ago, and with a fundraising goal of $50,000 for this year,

the DeVito Foundation is on target to raise over $200,000 in support of the PFF. We interviewed Nick DeVito, Pete’s son, to find out how he has

been able to create such a successful event.

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

the event fresh and increase attendance?

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

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

Almost all the golfers stay for dinner.

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

What was a straightforward golf outing in the beginning now has a lot more

going on. Representatives of local restaurants provide refreshments to

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

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

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

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

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

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

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

to win a free club membership for a year.

At the dinner in the evening, we change up the menu and make sure the

auction includes special items like iPads and trips. This keeps the

attendees interested and wanting to participate.

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

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

Nick: First, know your audience and community. Who are you targeting

to come to the event and who will help you do that? For example, my

brothers, cousins, myself, and others work with our friends and business

associates. Second, it is valuable to know who to ask for prizes and

sponsorships, and know your price range. I think it’s important to know

the community you’re working with and at what dollar value they’ll support

you. And it’s important to offer options so businesses with a limited

budget can participate, too.

What’s the best part about hosting your event?

Nick: Seeing the level of excitement from everybody, both on the course

and at dinner. They’re having fun, but they’re also willing to spend an

hour at dinner listening to our story and supporting our cause. This event

is very personal to my family. We keep our focus on our twofold goal:

to raise awareness and money for IPF, and to celebrate my dad’s legacy.

The guests tie both of those together.

For more information about the 5th Annual Pete DeVito Memorial

Foundation Golf Outing, visit www.petedevitofoundation.org.

Why did you choose to hold a golf outing?

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

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

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

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

also honoring his memory.

Who is involved in planning and executing the event?

How do you keep things running so seamlessly?

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

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

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

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

coordinate the auction, others will work on getting sponsors

and golfers, and so on.

What drives you to keep expanding the event each year?

Nick: We were concerned that we’d reach a point where

people would lose interest and sponsorships would dwindle,

but just the opposite has happened. At each outing, people

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

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

accomplishment, people having fun while doing something

that makes a difference.


SEPARATE FAMILY EXPERIENCES LEAD TO A SHARED COMMITMENT

Please describe your families’ experience with PF.

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

from the United Kingdom and came to the United States in

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

in 1999 at age 61.

Colleen: My father had already been diagnosed with PF when

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

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

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

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

until my dad had it.

What made you want to get involved with the PFF and

how has fundraising to support the Foundation’s mission

been rewarding to you?

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

with nonprofit organizations. So getting involved with the

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

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

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

what my family did.

Martin: For a while, I’d

been thinking I want to

give back and was looking

for something that would

be fulfilling to me. When

Colleen’s dad got sick, I

thought, “This is that thing.”

PF is something to which

we both have a connection

and commitment. We’d

like to make inroads into

treatments and help find

a cure, but there’s also

an element of giving back

to society in general.

What made you choose a dance party for your

October 2014 fundraiser? What was the event like?

Colleen: Martin and I had been taking dance lessons

at the Arthur Murray Dance Studio in Oakbrook Terrace,

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

Arthur Murray ended up donating the space, which

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

and having studio teachers give group dance lessons.

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

music fans, and one number was a country routine

wearing boots and hats we’d bought on a trip to

Nashville. We wanted a fun, private party for friends,

family, and coworkers. Martin’s colleagues were

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

they’ve seen him in before!

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

people we know from different settings to share

something unique and fun that was also a tribute to

our fathers. Everyone participated in the dance lessons

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

there—mine came all the way from England.

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

to know about this disease?

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

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

to be good candidates. We know increasing awareness

of the disease can speed up the period from detection

to diagnosis to looking at options.

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

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

year. Including hosting the dance party, we raised funds

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

definitely stay involved!

Married couple Colleen and Martin Attwell found a common bond in an unfortunate coincidence,

both lost their fathers to pulmonary fibrosis (PF). Determined to help other families, the Attwells have

become enthusiastic volunteers for the Pulmonary Fibrosis Foundation (PFF), most recently hosting

a successful dance party that raised almost $13,000 for PF research.


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

His wife, Cheryl, gives Larry a sense of hope, and together they are a dedicated team

of Pulmonary Fibrosis Foundation (PFF) advocates. With their generous contributions

(including monthly pledge payments), time, and passion, the Runyons are a model

of how to become fully engaged with the PF community.

Why did you decide to pledge monthly?

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

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

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

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

You’ve been involved in many awareness and fundraising activities:

staying active on the PFF’s Facebook and InspireSM pages, wearing t-shirts,

writing letters to the editor during Global Pulmonary Fibrosis Awareness

Month, and more. What motivates and inspires you to stay involved?

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

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

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

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

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

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

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

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

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

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

What is your advice to someone who wants to have an impact,

but doesn’t know where to start?

Cheryl: Start with the PFF! I point people to your website, which is very easy

to use. This is such an Internet world that I tell people to also get on the Facebook

or go to the InspireSM page. There are so many ways to get involved, not just by

giving money. I advise anyone just finding out about PF to look for ways to give

and get support.

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

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

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

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

able to get them to start thinking differently about PF.

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

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

A lot of patients go to their doctors’ offices, sit there, listen, and leave. They don’t

ask questions. I might have been one of those patients if I didn’t have Cheryl.

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

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

going on with Larry before he was finally diagnosed with

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

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

one of those people who go out and get information as

a way of coping with things, and that helped.

Larry: Traveling to higher altitudes, I was struggling for

oxygen and couldn’t understand why. My doctor started

putting everything together and said you need to go in for a

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

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

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

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

inspiration, dragging me, sometimes kicking and screaming,

to where I needed to be.

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

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

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

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

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

a big difference.

Now it’s been over seven years and I feel pretty good. When

I stop going out to hit golf balls—which I still do using a golf

cart and my oxygen—then you’ll know I’m in trouble.

Why is spreading disease awareness so important?

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

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

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

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

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

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

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

everybody else who has it.

How did you first learn about the Foundation?

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

I gravitated toward your group because it was so welcoming

to me. I decided to put my focus on the PFF.


philanthropy

Susan Rattner retired from a successful medical practice

in Fairfax, Virginia, in 2002. Currently, she holds an

associate appointment at Johns Hopkins Bloomberg

School of Public Health in the Department of Health

Policy and works as a consultant on various community

initiatives. She also volunteers at the Arlington Free

Clinic and other community health centers providing

gynecological and breast examinations. Steven Rattner

is Chairman of Willett Advisors LLC, the investment

arm for former New York Mayor Michael R. Bloomberg’s

personal and philanthropic assets. In addition, he serves

as the Economic Analyst on MSNBC’s Morning Joe and

is a contributing writer to The New York Times op-ed

page. Previously, he served as counselor to the Secretary

of the Treasury and led the Obama administration’s

successful effort to restructure the automobile industry.

SPOTLIGHT ON PHILANTHROPY

Giving Back and Raising Awareness

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

SUSAN: Our dad was diagnosed after having had a cough and

shortness of breath for over a year. He’d been misdiagnosed

with various things. He was finally correctly diagnosed in

1999, and he passed away from PF in 2004. I’m a physician

but didn’t know anything about this disease, although I

subsequently learned a lot about it. At that time there weren’t

any treatments and very few options available.

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

a long time. When Dad first wasn’t feeling well, we didn’t

know what it was. It’s a mysterious disease and he’d always

been in perfect health; I don’t think he spent a day in the

hospital before he got sick. It frustrated us, as I’m sure it has

frustrated other families, not to know if it’s genetic or

random or what.

How did you first learn about the PFF?

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

told you have something for which there’s no cure and not

much treatment, you do what you can to learn more. He

spent a lot of time on the Internet and eventually found his

way to the PFF. I think the PFF gave him a lot of comfort —

I think he felt better knowing there were people who could

talk him through the issues.

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

SUSAN: For me, coping means doing what we’re doing,

making other people aware of PF and trying our best to

support the research and the people suffering from this

horrible disease. Everybody deals with grief in their own

way; for me, it’s trying to prevent somebody else from going

through it. Because PF is not widely known, bringing

awareness to people is the key.

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

George Rattner surrounded by his grandchildren.


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 COO, Patti Tuomey,

at 888.733.6741.

PLEDGE PFF!

Pledge PFF! is our monthly giving program, and

an important source of revenue for the Foundation.

Our generous monthly donors provide stability and

support to our important programs. To learn more

about how you can maximize your impact, visit us

at www.pulmonaryfibrosis.org/pledgefaqs.

EMPLOYER MATCHING GIFTS

Please consider maximizing your donation through

an employer matching gift program. To find out

whether your employer will match your gifts, visit

www.pulmonaryfibrosis.org/employermatch.

Your contribution today will have a positive

and lasting impact on the PF community.

The Pulmonary Fibrosis Foundation thanks you

for your generosity and support.

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

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

means or the time to give back, have an obligation to do that. That’s

the way we were brought up, the way we’ve always thought of our lives.

There’s a very personal element to this that’s very motivating whether

you’re talking about time or money. I’ve always said to people “You can

get involved and support whatever organization or cause you want in

whatever form you want, but you should do something.” I have a lot of

things I try to help with in one form or another, but this one is probably

the most personal.

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

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

smaller Foundation, just finding its way in the nonprofit world, but it has

subsequently grown into a much more effective, well-managed nonprofit.

Serving on the Board has been an enjoyable experience. I’ve enjoyed

watching the PFF grow and accomplish things like the CCN, where

patients can get all the services and support they need. Our dad had to

find those things on a piecemeal basis. I’m not so sure he would have

gone to support groups, but it would have been nice to have the option!

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

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

it occurred, we were fortunate to receive some of our dad’s generosity when

he passed away. Instead of keeping if for ourselves, we wanted to use that

money to address the disease that took his life.

SUSAN: The average general practitioner is probably totally unaware of

this disease. We need to educate the medical world and we need more

research. More people die from this disease than from many cancers and

there’s no cure and just two drugs approved for treatment in the US. Most

times, we don’t even know actual figures of PF mortality because it’s often

not listed on the death certificate. It’s usually idiopathic, so we don’t

know what caused it, and there’s some hereditary component that no one’s

been able to pinpoint yet. All these things need to be tracked, figured out,

and worked out. To do that, we need both the CCN sites and the PFF

Patient Registry, where everyone can get what they need under one roof.

They work side by side.

What should everyone know about the disease?

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

don’t really know why some people are affected. It’s the only disease that’s

touched our family in such a way. PF hasn’t gotten the attention it should

have, and the amount of money poured into research compared to other

diseases is miniscule. I’m honored and proud to be part of the Foundation

that’s trying to change that.


advocacyEMPOWERING PEOPLE LIVING WITH PF

A little support makes a big difference in the lives of people with

pulmonary fibrosis (PF). The Pulmonary Fibrosis Foundation’s (PFF)

Leanne Storch Support Group Fund awards grants that can be utilized

to host educational events, start a new group, or fund other related

support group activities.

Leanne Storch Support Group Fund Supports Free Clinic… and More

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

DOT: In order to get listed for a transplant, I’d needed

to raise $26,000 for the testing. My mom had given me

a Mustang convertible that I couldn’t use because I was

so sick, and we came up with the idea of raffling it off at

$100 a ticket. A month later, we’d sold 200 tickets!

The first person to give me a raffle donation was a man

I’d only met once, and he gave me a $1,000 donation. The

winning ticket at the raffle happened to be his! I called to

tell him, and he said, “Dot, let’s talk about it. You’re going

to need a car when you get better, and I already have a car.”

So he gave me back my car. It was so generous, and it helped

give me a tangible symbol that I was going to get better.

Dr. Nambiar, what is your background in PF?

DR. NAMBIAR: I did my pulmonary training at the

University of Michigan, finishing my fellowship in 2009.

While there, I got to participate in some research with

Fernando Martinez, MD, and Kevin Flaherty, MD, two

of the world’s experts on PF. That sparked my interest,

but I wasn’t sure yet that I wanted to do this as a career.

I spent a year at the southern tip of New Zealand, where

I was the only lung specialist, and that experience made

me realize I had an affinity for teaching patients, families,

and others. So, when I came back to the US in 2010,

I found a great opportunity with the UT Health Science

Center. It’s a fairly small academic program, but one with

experts in every major field in pulmonology. I came to

fill the program gap in fibrotic lung disease.

I’m now getting a lot more referrals and complex

cases, and we’ve learned the only way to establish a reliable

diagnosis is through multidisciplinary collaboration. We’re

putting the pieces together to give patients comprehensive

care. Dot got her transplant through our program, and

she’s received exceptional care.

The San Antonio Pulmonary Fibrosis Support Group

received one of these grants for its second “Free Semi-

Annual PF Clinic,” held in November 2014. The PFF

spoke with the two “powerhouses” behind the San Antonio

PF Support Group: Dorothy “Dot” Delarosa, a PF patient

and lung transplant recipient, and Anoop Nambiar, MD,

Assistant Professor and Staff Physician at the University

of Texas (UT) Health Science Center and Staff Physician

at the South Texas Veterans Healthcare System’s Audie

L. Murphy Memorial Veterans Hospital.

Dot, please describe your experience with PF.

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

with asthma and given inhalers and prednisone, which

didn’t help. Eventually I went to a pulmonologist who

suspected I had idiopathic pulmonary fibrosis (IPF) and

told me to go straight to the hospital. Of course I thought

he was crazy, but I was in the hospital for 26 days. That’s

when I first heard the first word “transplant.”

Two years later, in 2010, I got my

transplant. I was only 40, unusually

young for IPF, but I was in a wheel-

chair and on oxygen 24/7. I got the

call for the transplant and my life

has never been the same. I was born

in 1967 and my transplant date was

June 7. I call it my second birth.


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

DOT: When I got diagnosed, I wanted to meet other

people I could talk to — people I could see, not just

communicate with online. The closest support group

was in Houston, 200 miles away. So I started one in

San Antonio in 2009. We’ve had about 20–30 members

over the years.

DR. NAMBIAR: After I came to San Antonio in 2011,

I started an academic clinic for IPF patients at UT,

but realized I wanted to have more direct exposure to

patients and their families. I found the support group

online, gave Dot a call in 2012, and here we are.

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

DR. NAMBIAR: We wanted to fund a free clinic event

through our support group, and tried it out for the first

time in May 2014, then again in November. It’s an

amazing event that addresses the tremendous lack of

awareness and understanding of the disease — not just

for patients and families, but also for community

physicians, because that’s often where patients go first.

Our idea was that it would help patients without

insurance, but that turned out to be less of an issue than

we’d expected. Four of the five patients who came to

the first clinic had very good insurance, but they wanted

a second opinion. Their pulmonologists hadn’t been

sure of their diagnoses and these patients were asking,

“What do I have, how bad is it, and what can I do about

it?” So although the focus on it being a free clinic

was and is important, it’s become more of an informa-

tional event.

We ask patients to bring their records to the clinic.

I review them and give a “curbside consult,” making sure

they know it doesn’t replace a formal consultation. We

then refer people to the UT Health Science Center where

they’re doing some exciting things in clinical trials.

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

enough to donate some posters and other disease

education materials. We make the most of everything

we get!

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

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

is extremely common. I’d ballpark it at 50% — and it’s not just IPF,

but all fibrotic lung disease, that often doesn’t get recognized or is

misdiagnosed. It’s not that community doctors don’t care about IPF;

it’s that it’s a rare disease. In their whole clinical practice they might

see one or two cases a year. They therefore might not be aware of

what they need to do. We’re trying to raise awareness.

To give you an example, of the five patients we saw last year at

the first free clinic, four were diagnosed with IPF, but only two turned

out to have it. It’s wonderful that we have the two new treatments

approved in the US for IPF patients, but they haven’t been shown to

work in non-IPF fibrotic lung disease patients. So it’s important that

these new therapies are used in appropriately selected, correctly

diagnosed patients.

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

DR. NAMBIAR: For our monthly or bimonthly meetings, I give a

PowerPoint presentation on an IPF topic. I used to make a presentation

and give attendees a handout of the slides, but the handout wouldn’t

have color or animation. The award got us a portable projector so that

I can give a true presentation to patients and families at the meetings.

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

much more impact.

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

equipment for the free clinic. We hope to use some of our 2014 award

towards doing spirometry [test that measures lung function] or walk

testing equipment for the free clinic.

I have to say Dr. Nambiar really has my heart for what he’s done

with us. The first day we met, I said I had to visit a sick friend and he

said, “I’ll go with you.” He went to visit a patient he’d never met, and

I realized right away that he has a heart for the people. Our support

group is a beautiful team — and I know it’s just the beginning.


researchPUTTING YOUR DOLLARS TO WORK

THE PULMONARY FIBROSIS FOUNDATION (PFF) directly funds

research, promotes advocacy and fund-raising efforts, and assists in

developing collaboration between industry and academic researchers.

The PFF Research Fund directly supports research through the

I.M. Rosenzweig Junior Investigator Awards, which helps advance

the research of junior scientists, and the Albert Rose Established

Investigator Awards, which funds established investigators.

Scientists have long known that

the cells in our body communicate

with each other. Each cell releases

proteins that can signal nearby cells

to reproduce, travel closer, shut

down, or even die.

Funded by an Albert Rose

Established Investigator Award in

2012, Dr. James Hagood has found

that the cells (fibroblasts) that

make scar tissue in the lungs bundle

these proteins into a package (called

a “vesicle”) that is delivered only

to other specific types of cells in the

lungs. Some of the proteins inside

of these packages can contribute to

scarring in the lungs. One day, drugs

that block these proteins may be

beneficial to treat or prevent PF.

PFF Research Awards Help Investigators Make New Inroads into Understanding PF

Dr. Hagood’s PFF supported

research helped him obtain a

$1.8 million grant from the National

Institutes of Health (NIH)

in 2014.

Dr. Hagood’s PFF supported research helped

him obtain a $1.8 million grant from the National

Institutes of Health (NIH) in 2014 to continue

his research into the role of these packaged proteins

in PF.

Dr. Hagood is a pediatric pulmonologist

and Chief of the Division of Pediatric Respiratory

Medicine at the University of California, San Diego

and the Rady Children’s Hospital – San Diego.

His lab has studied PF for nearly 20 years with a

focus on mechanisms by which fibroblasts, the cells

responsible for the formation of scar tissue, become

abnormally activated. His lab has shown that Thy-1,

a natural fibrosis suppressor gene, becomes silenced

in PF fibroblasts. Dr. Hagood’s lab was the first to

describe epigenetic alterations (acquired changes that

don’t alter DNA sequences but cause them to behave

differently) in PF.

These awards support research projects that offer

a high likelihood of improving the understanding

and treatment of PF in the areas of basic science,

translational, clinical medicine, and/or social science/

quality of life research. Two $50,000 awards in each

of the two categories are granted annually.

PFF GRANT HELPS INVESTIGATOR OBTAIN MAJOR NIH FUNDING


Telomeres are strands of DNA at the ends of chromosomes

that safeguard chromosomes and keep them healthy.

Scientists think telomeres help to protect individuals

from disease and can slow the aging process. In fact,

as people age, telomeres become shorter. Short telomeres

may not be able to keep chromosomes healthy and might

predispose people to disease.

In 2007, scientists found that some people with

idiopathic pulmonary fibrosis (IPF) had shorter telomeres,

and that the genes that help maintain telomeres at a

healthy length were abnormal. Until recently, it hasn’t

been clear why short telomeres might lead to IPF.

Funded by an Albert Rose Established Investigator

Award that he received in 2012, Dr. Glenn Rosen has

discovered that one of the genes responsible for maintain-

ing telomere length helps to protect the air sacs of the

lung from oxidative stress, which has long been known

to contribute to lung injury and fibrosis.

Although trials of antioxidants, such as

N-acetylcysteine (NAC), have not been shown to be

beneficial in IPF, Dr. Rosen’s work suggests further

research in this area may yield important insights about

the day-to-day factors that contribute to lung injury

and scarring.

Dr. Rosen has been on the faculty of the Stanford University School

of Medicine since 1993 and was an Associate Professor of Medicine in the

Division of Pulmonary and Critical Care Medicine. Dr. Rosen’s laboratory

research focused on translational studies in PF; specifically, his laboratory

studied mechanisms involved in the pathogenesis of pulmonary fibrosis

and the development of novel treatments for fibrotic lung disease. His more

recent work involved the novel functions of telomerase and the genetics

of PF.

Dr. Rosen is presently Medical Director, Exploratory Clinical and

Translational Research (ECTR), Fibrosis, at Bristol-Meyers Squibb, New

Brunswick, NJ.

One of the problems in PF is that there are too many

cells making scar tissue in the lungs. According to Dr.

Haiteo (Mark) Ji, these cells (called “fibroblasts”) seem

to reproduce in part due to interactions between two

proteins: Beta Catenin and T-Cell Factor.

Funded by an I.M. Rosensweig Junior Investigator

Award in 2012, Dr. Ji developed a high-throughput

system to identify four molecules that prevent the Beta

Catenin and T-Cell Factor proteins from causing lung

cells to reproduce. This exciting work is continuing and

will hopefully lead to a phase 1 clinical trial of one of

these molecules in the future.

Dr. Ji is an Assistant Professor of Chemistry and

Assistant Professor in the Center for Cell and Genome

Science, University of Utah. A native of China, he

received his PhD and BS degrees at the Second Military

Medical University of China. As a postdoctoral

fellow at Northwestern University under Professor

Richard Silverman, he proposed a new concept,

minimal pharmacophoric element and developed a

new method for fragment-based inhibitor design,

called fragment hopping. By using this new strategy

Dr. Ji discovered the most potent and dual selective

nNOS inhibitor reported to date. Dr. Ji’s independent

research interests are largely dedicated to the structure-

based design and synthesis of small molecules to

modulate cellular signaling pathways that are critical

in pulmonary fibrogenesis. In the process of designing

and synthesizing new small-molecule inhibitors,

he also aims to develop novel and widely applicable

techniques for future drug discovery.

INSIGHTS INTO TELOMERES’ CONTRIBUTION TO IPF

PROTEIN INTERACTIONS MAY LEAD TO LUNG SCARRING

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Lifting their voices to raise money in the fight against pulmonary fibrosis (PF), some of

Broadway’s finest appeared at New York’s Birdland Jazz Club on February 23 for the fifth

annual Broadway Belts for PFF! Award-winning actress and dedicated Pulmonary Fibrosis

Foundation (PFF) advocate Julie Halston hosted the sold-out event, which brought together some

TURNING TALENTS TOWARD A PULMONARY FIBROSIS CURE

of Broadway’s best vocal talent for a night of spectacular entertainment.

The event raised more than $150,000 to benefit the PFF.

“We are incredibly grateful to our dear friend Julie Halston and all the

others who worked so hard to make this event a success,” said Patti Tuomey,

the Foundation’s President and Chief Operating Officer. “The show always

features such amazing talent and in five years, has contributed more than

$387,000. It’s this type of dedication and effort from the PF community

that will help us fund research to find a cure.”

This year’s stars presented an intimate evening of melody under the

musical direction of Christopher McGovern and returning director Carl

Andress, who has directed all five performances of Broadway Belts for PFF!

The star-studded cast included Santino Fontana (Cinderella ), Julia Murney

(Wicked ), Tony Award-winner Randy Graff (City of Angels ), Annaleigh

Ashford (Kinky Boots, You Can’t Take It With You ), Erich Bergen (Jersey

Boys film, TV’s Madam Secretary ), Robert Creighton (The Mystery of Edwin

Drood ), Zakiya Young (Stick Fly, The Little Mermaid ) and Betsy Wolfe

(Bullets Over Broadway, The Mystery of Edwin Drood ). Ms. Halston hosted

the program for the fifth straight year with her typical, incomparable humor

and heartfelt comments. Most recently she has appeared in the Broadway

hit You Can’t Take it With You.

Fifth Annual Broadway Belts for PFF! is a Sold-out Success

Santino Fontana

Randy Graff

Julie Halston

Zakiya Young

KE

VIN

ALV

EY

Broadway Belts 2016 Monday, February 29

save the date


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

PRESENTING

Doug and Gay Lane Charitable Foundation

Genentech

The Steffy Family Foundation Fund

DIRECTOR’S CIRCLE

Daryl and Steven Roth Foundation

J. Todd Tullis in memory of Kathy Tullis

Erwin & Isabelle Ziegelman Foundation

BROADWAY PARTNER

Broadway Cares/Equity Fights AIDS

Robert and Patricia Ross on Behalf of FARE

ENSEMBLE MEMBER

Nederlander Organization

CHORUS LINE

Jennifer A. Galvin, MD

Steve and Bev Hossa

IPF Patients PNW

Michelle Harmon-Madsen and Ken Madsen

Bruce T. Sloane

Mary Halston and Bruce Sternemann

For a full list of sponsors

visit bit.ly/broadway2015sponsors.

Broadway Belts for PFF! began in 2011 as an

evening to honor the beloved Associated Press theater

critic Michael Kuchwara. In May 2010, Mr. Kuchwara

passed away from idiopathic pulmonary fibrosis (IPF).

Ms. Halston, a friend of Mr. Kuchwara, became a

leading spokesperson for the PFF after her husband,

broadcaster Ralph Howard, received a lung transplant

as a result of his IPF shortly after Mr. Kuchwara’s

passing. (Read more about Julie Halston’s and Ralph

Howard’s experiences with IPF and the PFF on

page 18.)

“I want everyone to know about the Pulmonary

Fibrosis Foundation so that no one with this terrible

disease has to go through it alone,” Ms. Halston said.

“My husband and I started this benefit five years ago

to remember our friend Michael, and we hope the

awareness and money raised brings us closer to a cure.”

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

PATTI TUOMEY, EDD / PFF PRESIDENT AND CHIEF OPERATING OFFICER

Ralph Howard

PHOTOS BY MIKE SHEEHAN UNLESS OTHERWISE NOTED


PF COMMUNITY EVENTSJULY 27–30 • Vermont Stem Cell Conference

University of Vermont College of Medicine

BURLINGTON, VERMONT

SEPTEMBER • Global Pulmonary Fibrosis

Awareness Month 2015

Pulmonary Fibrosis Foundation

WORLDWIDE

SEPTEMBER 26–30 • PFF @ ERS Annual

Congress Amsterdam 2015

AMSTERDAM, NETHERLANDS

2015 CALENDAR

JOIN US ON SOCIAL MEDIA

TEAM PFF EVENTS

MAY 15–20 • PFF @ ATS 2015

International Conference

American Thoracic Society

DENVER, COLORADO

JULY 17 • PFF @ Scleroderma Foundation

2015 National Patient Education Conference

NASHVILLE, TENNESSEE

OCTOBER 5–11 • World IPF Week

AMA Fuori dal Buio

WORLDWIDE

OCTOBER 24 • PFF @ CHEST 2015

American College of Chest Physicians

MONTREAL, CANADA

NOVEMBER 12–14 • PFF Summit 2015:

From Bench to Bedside

Pulmonary Fibrosis Foundation

WASHINGTON, DC

MAY 10 • Eugene Marathon

EUGENE, OREGON

MAY 25 • Bridgnorth Walk

BRIDGNORTH, ENGLAND

JUNE 7 • 8th Annual Greg Chandler & Guy F.

Solimano Memorial Golf Tournament

WEBSTER, NEW YORK

JUNE 12 • 5th Annual Pete DeVito Memorial

Foundation Golf Outing

MT. SINAI, NEW YORK

JUNE 13 • Rock-N-Roll Half-Marathon

SEATTLE, WASHINGTON

JUNE 21 • Mammoth Lakes Half Marathon

MAMMOTH LAKES, CALIFORNIA

JUNE 27 • 9th Annual BAF Memorial Bike

Run/Picnic

WEST MIFFLIN, PENNSYLVANIA

JULY 1 • No Tap Bowling Tournament

FULLERTON, CALIFORNIA

AUGUST 1 • Katherine A. Kraus Breathe

for Life Memorial 5K Run/Walk

DOVER, NEW HAMPSHIRE

AUGUST 28 • Luca Laurenza 5K Walk for

Pulmonary Fibrosis

NEW CASTLE, PENNSYLVANIA

SEPTEMBER 27 • Ironman Chattanooga

CHATTANOOGA, TENNESSEE

OCTOBER 3 • Pinkie Run/Walk in Memory

of Merion Valentine Adams

SPRING, TEXAS

FOLLOW THE PFF ON FACEBOOK, TWITTER AND INSTAGRAM.

View a current list of events at

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


*EXECUTIVE COMMITTEE

BOARD MEMBERS

Michael C. Henderson* CHAIRMAN

Carl Salzano* VICE CHAIRMAN

Joseph Borus, Esq.* SECRETARY

Dave Steffy* TREASURER

Daniel M. Rose, MD* CHIEF EXECUTIVE OFFICER

Patti Tuomey, EdD PRESIDENT AND CHIEF

OPERATING OFFICER

Kevin K. Brown, MD

Jennifer A. Galvin, MD

Thomas E. Hales

Kathleen O. Lindell, PhD, RN

Susan L. Rattner, MD

Stephen A. Wald, PhD

PFF TEAM

OFFICERS

Daniel M. Rose, MD CHIEF EXECUTIVE OFFICER

Patti Tuomey, EdD PRESIDENT AND CHIEF OPERATING OFFICER

Scott Staszak CHIEF FINANCIAL OFFICER AND ASSOCIATE

VICE PRESIDENT, INFORMATION TECHNOLOGY

Gregory P. Cosgrove, MD CHIEF MEDICAL OFFICER

SENIOR STAFF

Kevin R. Flaherty, MD, MS STEERING COMMITTEE CHAIRMAN, 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 CONTROLLER

Michelle Michael VICE PRESIDENT, MARKETING AND

COMMUNICATIONS

Michelle Clayton INTERIM VICE PRESIDENT,

DEVELOPMENT

Zoë D. Bubany VICE PRESIDENT, BOARD AND

EXTERNAL RELATIONS

Rex Edwards ASSOCIATE VICE PRESIDENT,

PFF PATIENT REGISTRY

Jeri Webb ASSOCIATE VICE PRESIDENT,

EXTERNAL RELATIONS

STAFF

Sarah Allabastro

Patrick Belics

Jennifer Bulandr

Daeshawna Cook

Mayra Diaz

Eirill Falck

Courtney Firak

Sammantha Marks

Jennifer Mefford

Amanda B. Miller

Angela Perillo

Anil Pirbhai

Andrea Smith

MEDICAL ADVISORY BOARD

Jesse Roman, MD* CHAIRMAN

Kevin K. Brown, MD PAST CHAIRMAN

Marvin I. Schwarz, MD PAST CHAIRMAN

Andrew H. Limper, MD CHAIRMAN, RESEARCH ADVISORY

COMMITTEE

Luca Richeldi, MD, PhD* INTERNATIONAL WORKING GROUP

CHAIRMAN

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

CHAIRMAN

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 Lasky, MD*

Kathleen O. Lindell, PhD, RN*

James E. Loyd, MD*

David 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 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. *RESEARCH ADVISORY COMMITTEE

ACCREDITEDCHARITY

give.org


www.pulmonaryfibrosis.org

WASHINGTON DCNOVEMBER 12–14, 2015

SPONSORSHIPS NOW AVAILABLE.

register now!

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#224ATS 2015 | DENVER

COME SEE US AT ATS VISIT OUR ATS BOOTH #224 AND LET US SCAN YOUR BADGE FOR A CHANCE

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Breathe Bulletin Spring 2015

Documents

Transcript of Breathe Bulletin Spring 2015