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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 >
05BREATHE BULLETIN | SPRING 2015
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.
06 WWW.PULMONARYFIBROSIS.ORG
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
summit@pulmonaryfibrosis.org
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
07BREATHE BULLETIN | SPRING 2015
plenary sessionsBoth sessions are open to all attendees, providing interactive discussions
of these important topics.
FACULTYAS OF 03.06.15
HAROLD R. COLLARD, MD
PFF SUMMIT CHAIR
JOAO ALBERTO M. DE ANDRADE, MD
WILLIAMSON BRADFORD, MD, PHD
KEVIN K. BROWN, MD
GREGORY P. COSGROVE, MD
SONYE K. DANOFF, MD, PHD
JERRY EU, MD
KEVIN R. FLAHERTY, MD, MS
CHRISTINE KIM GARCIA, MD, PHD
CHRIS GARVEY, FNP, MSN, MPA, FAACVPR
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
DAVID J. LEDERER, MD, MS
JOYCE LEE, MD
ANDREW H. LIMPER, MD
KATHLEEN O. LINDELL, PHD, RN
DAVID A. LYNCH, MD
FERNANDO MARTINEZ, MD, MS
A. BRUCE MONTGOMERY, MD
STEVEN D. NATHAN, MD
RAFAEL J. PEREZ, MD
PETER J. PITTS
GANESH RAGHU, MD
LUCA RICHELDI, MD, PHD
JESSE ROMAN, MD
IVAN O. ROSAS, MD
DANIEL M. ROSE, MD
CHRISTOPHER J. RYERSON, MD
CHRIS D. SCHUMANN, MS, RCEP, CES
MARVIN I. SCHWARZ, MD
JEFFREY J. SWIGRIS, DO, MS
ANDREW M. TAGER, MD
TIMOTHY P. M. WHELAN, MD
View a current list at www.pffsummit.org.
SUMMIT EDUCATION / ORGANIZING COMMITTEE
HAROLD R. COLLARD, MD
COMMITTEE CHAIR
ZOË D. BUBANY
GREGORY P. COSGROVE, MD
KEVIN R. FLAHERTY, MD, MS
SUSAN S. JACOBS, RN, MS
DOLLY KERVITSKY, CRT, CCRC
DAVID J. LEDERER, MD, MS
KATHLEEN O. LINDELL, PHD, RN
JESSE ROMAN, MD
DANIEL M. ROSE, MD
CHRIS D. SCHUMANN, MS, RCEP, CES
JEFFREY J. SWIGRIS, DO, MS
PATTI TUOMEY, EDD
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.
08 WWW.PULMONARYFIBROSIS.ORG
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.
09BREATHE BULLETIN | SPRING 2015
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.
10 WWW.PULMONARYFIBROSIS.ORG
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.
11BREATHE BULLETIN | SPRING 2015
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.
12 WWW.PULMONARYFIBROSIS.ORG
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 pcc@pulmonaryfibrosis.org.
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) info@pulmonaryfibrosis.orgpcc@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
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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.
13BREATHE BULLETIN | SPRING 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 pcc@pulmonaryfibrosis.org.
UPDATE
14 WWW.PULMONARYFIBROSIS.ORG
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.”
15BREATHE BULLETIN | SPRING 2015
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).
16 WWW.PULMONARYFIBROSIS.ORG
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 jennifer@pulmonaryfibrosis.org.
WAYS TO GET INVOLVED
• Host a luncheon or dinner
• Create a FirstGiving page to share your story
and hold a virtual fundraiser
• Donate to the PFF in lieu of favors at your baby
shower, wedding reception, bar mitzvah, etc.
• Ask your HR/Talent Director to hold a “Blue
Jeans Day” at work and donate the proceeds
• Hold a car wash in your community
• Set up a lemonade stand with your children
• Ask your workplace, school, or church to hold
a charity/PF awareness day
• Take up a collection in your neighborhood
• Hold a bake sale and donate the proceeds to
the PFF
• Plan a bowling night with friends and family
and ask them to make a donation
• Host a direct sales party such as PartyLite® or
Avon© and donate a percentage of sales
To learn more about how PFF advocates are
raising funds and awareness, see pages 18–21.
Mayor Rahm Emanuel proclaimed September 2014
Global Pulmonary Fibrosis Awareness Month in Chicago.
Mary Pat Slattery, dedicated PFF advocate, spearheaded
the effort to acquire the proclamation.
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.
17BREATHE BULLETIN | SPRING 2015
$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
18 WWW.PULMONARYFIBROSIS.ORG
$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.
19BREATHE BULLETIN | SPRING 2015
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.
20 WWW.PULMONARYFIBROSIS.ORG
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.
21BREATHE BULLETIN | SPRING 2015
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.
22 WWW.PULMONARYFIBROSIS.ORG
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.
23BREATHE BULLETIN | SPRING 2015
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.
24 WWW.PULMONARYFIBROSIS.ORG
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.
25BREATHE BULLETIN | SPRING 2015
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
26 WWW.PULMONARYFIBROSIS.ORG
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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27BREATHE BULLETIN | SPRING 2015
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
28 WWW.PULMONARYFIBROSIS.ORG
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
29BREATHE BULLETIN | SPRING 2015
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
30 WWW.PULMONARYFIBROSIS.ORG
*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
31BREATHE BULLETIN | SPRING 2015
www.pulmonaryfibrosis.org
WASHINGTON DCNOVEMBER 12–14, 2015
SPONSORSHIPS NOW AVAILABLE.
register now!
www.globalPFawareness.orgSEPTEMBERSPREAD AWARENESS IN
#224ATS 2015 | DENVER
COME SEE US AT ATS VISIT OUR ATS BOOTH #224 AND LET US SCAN YOUR BADGE FOR A CHANCE
TO RECEIVE A COMPLIMENTARY REGISTRATION TO PFF SUMMIT 2015.