2011 Annual Report by Pulmonary Fibrosis Foundation

results INVESTMENT CREATES

Pulmonary Fibrosis Foundation 2011 ANNUAL REPORT

Moving our cause forward requires transition, growth, and achievement. Focused on our mission, the Foundation is unyielding in our journey to grow and make a positive impact. With our investments and those of our supporters, we look at how we created unprecedented results.

Dear Friends,

The Foundation is dedicated to supporting research; the PFF Research Program consists of complementary efforts designed to foster innovation.

It was over eleven years ago when my father and his brother founded the

In 2011, we added four grant awards to the PFF Research Fund. These

Pulmonary Fibrosis Foundation (PFF). Their goal was to help those affected

grants — the Young Investigator and Established Investigator Awards —

by pulmonary fibrosis (PF). I’m proud to say that today’s Foundation has

are given over a two-year period. All grant applications are reviewed by our

evolved from a family foundation into a truly international patient advocacy

Research Advisory Committee. One objective of the Committee is to identify

organization. In 2011, the Foundation made significant strides in advancing

key gaps in basic and clinical knowledge that may impede the development

the core pillars of our mission.

of successful treatments. These “bridge grants” play a vital role in supporting

Last year we achieved a milestone when we presented the IPF Summit 2011: From Bench to Bedside — our inaugural scientific conference and our most

investigators at a crucial time and can provide the needed data to secure larger, federal grants.

ambitious initiative up to that time. The Summit featured a world-class

I am extremely appreciative for all the help we received in 2011. I would

faculty that included sessions for physicians, researchers, nurses, allied

like to especially thank the Foundation staff led by Chief Operating Officer

health care personnel, patients, and caregivers. Representatives from the

Patti Tuomey. Patti’s team made this groundbreaking year a reality, and

biotechnology, pharmaceutical, and investment communities were also in

I salute their tireless effort and dedication. I must also stress the importance

attendance. This provided a unique opportunity for collaboration with some

of the entire PF community — individual donors, corporate sponsors, and

of the major stakeholders who are working to find a cure for this disease.

volunteers who all help us achieve our goals — thank you. We would not be

The curriculum that was presented at the Summit will help contribute

able to do what we do without your support. Our job is far from over and I am

to improving diagnosis, providing better patient care, and stimulating new

certain you’ll continue to support us in the fight against this deadly disease.

research. Our Summit in 2013 is guaranteed to be just as innovative.

Sincerely,

Daniel M. Rose, MD PRESIDENT AND CHIEF EXECUTIVE OFFICER

To Our Community, For a young organization with bold and important goals, it is vital that we optimize our opportunities to grow and make an impact. In 2011, we invested time, energy, and resources into initiatives that truly enabled

Another highlight of last year was our tenth anniversary New Decade,

us to help advance our mission. These efforts culminated in the success

New Reach dinner. Held in tandem with the Summit , over 300 people came

of our inaugural, international health care conference — IPF Summit 2011:

together at The Field Museum of Natural History to recognize our achieve-

From Bench to Bedside — and highlighted a year of achievement,

ments and honor those whose tireless work made them a reality. It was

growth, and results.

a remarkable evening, filled with laughter and tears. We reflected on our

It was our President and CEO, Daniel M. Rose, MD, who had the vision to create a biennial IPF Summit . As a medical professional he knew the

previous successes and contemplated some of our ambitious plans for the next decade.

importance of such an ambitious endeavor. In successfully executing

Last year was a milestone in our history. I have great appreciation for

the Summit , the Foundation has made a distinctive leap forward and we

our founders and their work that we continue today. The Pulmonary Fibrosis

have firmly established ourselves as an important international resource

Foundation is more than any one person or team. I thank our tireless and

for the pulmonary fibrosis (PF) community. IPF Summit 2011: From Bench

dedicated staff for their commitment to results. And I applaud our volunteers

to Bedside , held in Chicago December 1–3, had the largest scope and

— our Board, medical advisors, and fundraisers. Every day they demonstrate

reach of any Foundation initiative. We invested significant resources to

a personal obligation to the community we serve. Our investment in 2011 truly

add integral infrastructure and key staff in patient relations, development,

created results and set the stage for greater impact in 2012 and beyond.

marketing, and finance to present the three-day, multi-faceted program. Additionally, the Summit set into motion opportunities for collaboration

Sincerely,

that will greatly benefit the entire PF community. Patti Tuomey, EdD CHIEF OPERATING OFFICER

PULMONARY FIBROSIS FOUNDATION

About the Disease WHAT DOES THE DISEASE LOOK LIKE?

WHAT IS PULMONARY FIBROSIS AND WHAT ARE THE CAUSES? Pulmonary fibrosis (PF) is a progressive, fatal condition in which the lung tissue becomes thickened, stiff, and fibrotic (scarred). As the scarring progresses, the lungs lose their ability to transfer oxygen, and the brain and other organs don’t receive the adequate oxygen needed to function properly. Pulmonary fibrosis can be the result of exposure to certain environmental agents (dust, silica), medications (antibiotics, antiarrhythmics), radiation, autoimmune diseases (scleroderma, rheumatoid arthritis), or a genetic

IPF affects approximately 200,000 individuals

Symptoms include:

in the United States with an estimated annual

• Shortness of breath (dyspnea)

mortality of 40,000. As a result of the difficulty

• Chronic dry, hacking cough

in making a diagnosis and lack of a national

• Fatigue and weakness

surveillance registry, the accrual of accurate

• Discomfort in the chest

data has been problematic. For these reasons

• Loss of appetite

it has also been difficult to obtain adequate data

• Weight loss

regarding the incidence of those affected by pulmonary fibrosis from all causes.

Treatment includes supplemental oxygen, respiratory therapy, maintaining a healthy lifestyle

predisposition. However, in most situations the etiology is unknown. If there

IPF has no strong demographic profile although

(optimizing weight and exercise), and for those

is no known cause, then the disease is called idiopathic pulmonary fibrosis

it appears to affect more men than women.

who qualify, lung transplantation.

(IPF). There is no cure for IPF, and there is no FDA-approved treatment

The median age at the time of diagnosis is

for IPF in the United States. Extremely limited therapeutic options for IPF

approximately 63 years; however, the disease

are available in the European Union and Asia.

affects individuals of all ages.

Pulmonary fibrosis is a devastating disease. It is our goal to help find effective treatments and ultimately a cure. Until that time, we aspire to raise awareness, help educate the professional and patient communities, promote patient and legislative advocacy, and provide support to patients, family members, and caregivers.

2011 ANNUAL REPORT

In 2011, the Pulmonary Fibrosis Foundation made our greatest single investment in advancing education, fostering collaboration, and increasing awareness of pulmonary fibrosis. It was the vision of our President and CEO, Daniel M. Rose, MD, to host an

The Summit featured innovative continuing medical

international scientific conference to facilitate these initiatives and to identify

education programs for physicians, researchers,

new approaches to treat and ultimately find a cure for idiopathic pulmonary

registered nurses, and allied health professionals

fibrosis (IPF). Our inaugural biennial conference, IPF Summit 2011: From

to improve their understanding of PF. In addition,

Bench to Bedside , was the culmination of over two years of planning and

there was a one-day program to address the growing

preparation, and its success set into motion opportunities that will greatly

educational needs of patients, family members,

benefit the pulmonary fibrosis (PF) community.

and caregivers. Sessions were led by a world-class faculty and are available as on demand webinars through our website.

PULMONARY FIBROSIS FOUNDATION

inspiring collaboration The Summit was planned in accordance with the Essentials and Standards of the Accreditation Council for Continuing Medical Education, in partnership with The France Foundation and National Jewish Health, and was endorsed by the American Thoracic Society. Clinical and scientific objectives for the Summit were identified in a needs assessment. Following completion of the medical sessions participants were able to:

REACHING THE PF COMMUNITY • Explain the pathophysiology of IPF based on the most current data

IPF SUMMIT 2011 ATTENDANCE STATISTICS

• Accurately diagnose IPF using a systematic approach

Medical Professionals

244

• Effectively implement key diagnostic procedures including HRCT

Patients and Caregivers

127

scanning and surgical lung biopsy • Discuss recent evidence for treatments in the management of IPF • Recognize genetic components of IPF

States Represented

Countries Represented

Satellite Viewing Groups

225 viewers at

• Describe the role of lung transplantation in IPF and the factors

10 national and

that affect candidacy and timing

3 international

• Provide patient lifestyle management tools that improve functional status

satellite locations

• Develop a comprehensive approach to the management of IPF that

Live Webcast Viewers

600 viewers in

includes both pharmacologic and non-pharmacologic therapies

9 countries

2011 ANNUAL REPORT

THE SUMMIT FACULTY SUPPORTING NEW RESEARCH IPF Summit 2011: From Bench to Bedside emphasized the importance of new research;

twenty-six young academic investigators were chosen to give poster presentations on their basic, clinical, translational, or social science/quality of life research. All submissions were peer-reviewed and graded; awards were given for the first, second, and third place posters. 1st Place Jonathan Kropski, MD VANDERBILT UNIVERSITY

“Herpes Virus Infection Exacerbates Endoplasmic-Reticulum Stress and Acts as a ‘Second-Hit’ in the Development of Lung Fibrosis”

KENNETH ADLER, PhD

CHRISTINE KIM GARCIA, MD, PhD

North Carolina State University

University of Texas

JOHN DAVID ARMSTRONG II, MD, MA

CHARLES HOOPES, MD

National Jewish Health

University of Kentucky College of Medicine

BRIAN BAIRD, MS, PhD

ALIYA N. HUSAIN, MD

Former U.S. Representative to Congress

University of Chicago

RITU S. BARAL

SUSAN S. JACOBS, RN, MS

CANACCORD Genuity

Stanford University

TIMOTHY S. BLACKWELL, MD

MIRANDA G. JAMES, Esq

Honorable Mentions

Vanderbilt University Medical Center

Caring Voice Coalition

Stephenie Takahashi, MD

WILLIAMSON BRADFORD, MD, PhD

NAFTALI KAMINSKI, MD

UNIVERSITY OF CHICAGO

InterMune, Inc.

University of Pittsburgh School of Medicine

KEVIN K. BROWN, MD

DOLLY KERVITSKY, RCP, CCRC

National Jewish Health

Pulmonary Fibrosis Foundation

HAROLD R. COLLARD, MD

TALMADGE E. KING, Jr., MD

University of California

“The Inhibitory Molecule, BTLA, Regulates Pulmonary Fibrosis in a Mouse Model”

2nd Place

Anand Iyer, MD

University of California

Adam Booth, PhD

HAMPTON UNIVERSITY SCHOOL

GREGORY P. COSGROVE, MD

JOSEPH LASKY, MD

UNIVERSITY OF MICHIGAN

OF MEDICINE

National Jewish Health

Tulane University

BRENDA CROWE, CRT

KATHLEEN LINDELL, PhD, RN

Exempla Lutheran Medical Center

University of Pittsburgh

ARYEH FISCHER, MD

BRONWYN LONG, DNP, MBA, RN

National Jewish Health

“Fibroblast Responses to Decellularized Human

“Angiogenic Mediators Regulate Single-Walled

Lung Slices Implicate the Extracellular Matrix

Carbon Nanotube-Induced Fibrogenesis in

in Directing Fibroblast Phenotypes”

Human Lung Fibroblasts”

University of Colorado

3rd Place Adita Mathur, MD YALE UNIVERSITY

“Role of Semaphorin 7a in Lymphocytes in TGF-ß Driven Lung Fibrosis”

PULMONARY FIBROSIS FOUNDATION

KEVIN R. FLAHERTY, MD, MS

University of Michigan Health System

ROBERT B. LOVE, MD

Loyola University Medical Center

MARIANNE MANN, MD

MARVIN I. SCHWARZ, MD

Consultant, Washington, DC

University of Colorado

FERNANDO J. MARTINEZ, MD, MS

MARK SHREVE

University of Michigan

Pulmonary Fibrosis Foundation

WENDI R. MASON, MSN, ACNP-BC

JEFFREY J. SWIGRIS, DO, MS

Vanderbilt University Medical Center

University of Colorado

disease to the Foundation. Ms. Kervitsky played a key role in developing the programming

KENNETH R. McCURRY, MD

ANDREW TAGER, MD

for the patient and caregiver sessions at the IPF Summit 2011: From Bench to Bedside .

Cleveland Clinic

Harvard Medical School

The sessions were:

A. BRUCE MONTGOMERY, MD

JANET TALBERT, MS, CGC

• What is Pulmonary Fibrosis (PF) and

Cardeas Pharma

National Jewish Health

What are the Causes?

IMRE NOTH, MD

SHELIA VIOLETTE, PhD

University of Chicago

Stromedix

GANESH RAGHU, MD

GAIL G. WEINMANN, MD

University of Washington Medical Center

National Heart, Lung, and Blood Institute

JESSE ROMAN, MD

TIMOTHY P. WHELAN, MD

University of Louisville

Medical University of South Carolina

GLENN D. ROSEN, MD

ERIC S. WHITE, MD

Stanford University School of Medicine

University of Michigan Health System

DAVID A. SCHWARTZ, MD

DAVID A. ZISMAN, MD, MS

University of Colorado Medical Center

Sansum Clinic

DOLLY KERVITSKY JOINS THE PFF TEAM Dolly Kervitsky, RCP, CCRC, joined the Foundation in February 2011 as the Vice President of Patient Relations. She brings 30 years of experience and expertise in interstitial lung

• What are the Symptoms of Pulmonary Fibrosis

and What are the Treatment Options? • Lung Transplantation • Familial PF and Genetic Counseling • Pulmonary Rehabilitation • Establishing a Support Group • The Why, How, and What of Clinical Trials • Advocacy • Navigating Medicare and Health Insurance • Managing Advanced Disease and Hospice Care • Living with PF and How to Improve Quality of Life • Roundtable Discussions with the Experts

2011 ANNUAL REPORT

About Dolly Kervitsky Dolly Kervitsky, RCP, CCRC, began her respiratory therapy career as a Staff Respiratory Therapist in the Medical, Pediatric, and Burn and Trauma Intensive Care Units at the University of New

In 1983, she began working with pulmonary fibrosis patients and researchers

Mexico. In 1981, she joined National Jewish

as the Clinical Coordinator for the Specialized Center of Research investigating

Health (NJH) as a Staff Respiratory Therapist;

idiopathic pulmonary fibrosis, funded by the National Institutes of Health (NIH).

Over 950 patients and caregivers attended the

in 1982, she was named Acting Director of the

The NIH project was instrumental in the development of the Interstitial and

Summit in person and via webcast. The sessions

Respiratory Therapy Department.

Autoimmune Lung Disease Program at NJH where Ms. Kervitsky was named

were archived as webinars and are available at www.pulmonaryfibrosis.org/summit.

the Program Manager in 1992. In 2008, Ms. Kervitsky founded the Genetic Counseling Program for Familial

In less than ten months at the Foundation,

Pulmonary Fibrosis at NJH. She has served as a lead coordinator and steering

Ms. Kervitsky has set into motion major initiatives

committee member for several international multi-center research trials.

that will benefit the PF community in 2012 and

Additionally, she is a member of the American Thoracic Society, American

beyond. The Foundation is thrilled to have her

College of Chest Physicians, Association of Respiratory Care, and Association

on our team.

of Clinical Research Professionals.

PULMONARY FIBROSIS FOUNDATION

recognizing passion The dinnerâ&#x20AC;&#x2122;s theme, New Decade, New Reach:

We came together to commemorate our ten-year anniversary during a special evening

Together We Will Make a Difference , truly reflects

at The Field Museum of Natural History in Chicago.

todayâ&#x20AC;&#x2122;s Foundation. The evening was strategically timed so that the many different stakeholders

The Pulmonary Fibrosis Foundation (PFF) began as a family

that came to Chicago to attend the Summit could

foundation with the noble goal of finding a cure for pulmonary

attend the dinner as well. We take pride in facilitating

fibrosis. Just ten years later, we have evolved into a leading

relationship building, and the dinner was such

international organization fighting this devastating disease through

an opportunity. Old friends were reunited and new

important initiatives such as the Summit and our PFF Research

connections were made with everyone sharing

Program. Over the course of the evening we honored those who

a common bond of winning the fight against

have been instrumental in our growth and presented our vision

pulmonary fibrosis.

for the future.

The Foundation thanks our dinner co-chairs, speakers, emcee Mary Ann Ahern, and our dedicated staff for making the New Decade, New Reach dinner a tremendous success. The evening

was a fitting tribute to the legacy we carry forward. We have our eye on the future and are focused on fulfilling our mission.

2011 ANNUAL REPORT

fostering innovation The Pulmonary Fibrosis Foundation places great importance on creating an environment that will assist in the development of effective treatments for pulmonary fibrosis. In 2011, we invested in research through multiple avenues.

BUILDING KEY RELATIONSHIPS

The Foundation actively fostered relationships and opportunities to enhance research and drug

DIRECTLY FUNDING RESEARCH

ADVOCATING FOR LEGISLATION

development. We collaborated with other important

The Foundation funded important peer-reviewed

We regularly communicated with members

organizations such as the National Heart, Lung, and

research through our PFF Research Program.

of Congress and their legislative aides to lobby

Blood Institute (NHLBI); the National Organization

All grant requests underwent rigorous review by

for the passage of legislation important to

for Rare Disorders (NORD); the Food and Drug

members of the Research Advisory Committee

the PF community. We also provided resources,

Administration (FDA); and have worked closely

(RAC) under the direction of Jesse Roman, MD.

information, and tools for our constituents to

with other disease-specific organizations to

The RAC decided which projects would provide

contact their legislators and to promote disease

advance best practices and work on common

the best opportunities to advance research.

awareness in their community.

advocacy issues.

PULMONARY FIBROSIS FOUNDATION

ABOUT THE PFF YOUNG INVESTIGATOR AND ESTABLISHED INVESTIGATOR AWARDS In November of 2011, the Foundation established our Young Investigator and Established Investigator Awards that

FOSTERING INNOVATION

are offered through the PFF Research Fund. These grants

The Foundation conducted educational programs

play a vital role in supporting investigators at a critical time

such as the IPF Summit 2011: From Bench to

in the research process. Referred to as “bridge grants,” these

Bedside to foster a collaborative environment

funds provide support for the investigator to accrue enough

for improved understanding of PF and to provide

research documentation to secure larger grants.

a forum for discussions regarding development

PATIENT COMMUNICATIONS

of effective therapies. We also provided support

It is critical for patients to be able to advocate

The program awards two Young Investigator and two

for other organizations’ meetings, colloquia, and

for, and participate in, their own health care.

Established Investigator grants per year, each given over

seminars through partnerships and sponsorships.

Our patient communications were increased and

a two-year period:

These platforms offered opportunities for profes-

standardized in 2011 and are an excellent resource

sionals to expand their knowledge of PF, engage

for patients, family members, and caregivers to

with thought leaders in PF, and partner in

learn about clinical trials, research, safety issues,

drug development.

and advocacy efforts.

Young Investigator Awards $50,000 grant designed to encourage young investigators

(individuals within five years of completion of their formal training) to maintain and enhance their interest in PF research during the early stages of their academic career. Established Investigator Awards $50,000 grant designed to help established investigators

explore innovative areas of research that may not yet be eligible for a federal grant.

2011 ANNUAL REPORT

2011 GRANT COMMITMENTS In 2011, the Pulmonary Fibrosis Foundation solely or jointly funded twelve grants. Award recipients were: PFF RESEARCH FUND

ATS / PFF / CPF PARTNERSHIP GRANTS

2011 SPONSORSHIPS

• Dr. Erica Herzog of Yale University –

• Dr. Erica Herzog of Yale University – “Semaphorin 7a and Alternative

• UC Davis Medical Center; University of California,

Macrophage Activation in Idiopathic Pulmonary Fibrosis”

San Francisco; and Stanford University Medical

• Dr. Steven Huang of University of Michigan – “The Regulation and

Center – Understanding Pulmonary Fibrosis:

Pattern of the DNA Methylome in Pulmonary Fibrosis”

A Seminar for Patients, Caregivers, and Families

in Lung Transplant Recipients” (Year 2)

• Dr. Philip Simonian of University of Colorado Denver – “Protection from

• National Jewish Health – Familial Pulmonary

• Dr. Daniel J. Kass and Dr. Naftali Kaminski of

Inflammation-Induced Pulmonary Fibrosis by IL-22”

Fibrosis Genetic Counseling Program

University of Pittsburgh – “Targeting the Relaxin

• Dr. Beiyun Zhou of University of Southern California – “Endoplasmic

• Pittsburgh International Lung Conference

Pathway in Pulmonary Fibrosis”

Reticulum Stress Induces Epithelial-Mesenchymal Transition in Alveolar

• Yale University – Fifth Annual Symposium

• Dr. Imre Noth of University of Chicago –

Epithelial Cells: Role in Pulmonary Fibrosis”

on Nephrogenic Systemic Fibrosis and Allied

ATS / PFF INTERNATIONAL PARTNERSHIP GRANT

Systemic Fibrosing Disorders

“Prospective Evaluation of IPF Biomarkers” • Dr. Aldo T. Iacono of University of Maryland –

“Open Label Use of Inhaled Cyclosporine

“miRNA Expression in Patients with Rapidly Progressive IPF Versus Stable IPF” (Year 1) • Dr. Patricia J. Sime of University of Rochester –

“Translational Studies of New Therapeutic Targets & Biomarkers in PF”

• Anne Holland, PhD of La Trobe University, Australia – “Where Does

Pulmonary Rehabilitation Fit in the Management of Pulmonary Fibrosis?” ATS / PFF / CPF YOUNG INVESTIGATOR PARTNERSHIP GRANTS • Dr. Jia Guo of University of Rochester – “Fibrocyte Differentiation

is Regulated by Yin Yang 1 in Pulmonary Fibrosis” • Dr. Yan Sanders of University of Alabama at Birmingham – “Epigenetic

Regulation of Caveolin-1 by TGF-ß Mediated Signal Pathway in Lung Fibroblasts”

PULMONARY FIBROSIS FOUNDATION

empowering voices To raise awareness and increase support for patients and families affected by pulmonary fibrosis, the Pulmonary Fibrosis Foundation invested in strategic legislative initiatives in 2011. Most significantly, we focused on the Pulmonary

The PFREA was re-introduced into the 112 th

Additionally, we introduced CQ Roll Call, a web

Fibrosis Research Enhancement Act ( S. 1350,

Congress in the summer of 2011, supported by

tool that allowed the PFF community to directly

H.R. 2505 ) or PFREA. The PFREA requests

a bipartisan group of Senators — Christopher

request support for the PFREA from their district

Congress to set up a national pulmonary fibrosis

Coons (D-DE), Mark Kirk (R-IL), Michael Crapo

representatives.

(PF) surveillance registry, create an advisory board,

(R-ID), and Patty Murray (D-WA) — along with

and establish an education and awareness plan.

House Representatives Erik Paulsen (R, MN-3)

The PFREA also encourages the National Institutes

and Tammy Baldwin (D, WI-2).

of Health to “expand, intensify, and coordinate” their activities and research in PF.

Through meetings with potential sponsors, grassroots initiatives, awareness campaigns, and partnerships with other organizations including

During IPF Awareness Week 2011, members

the Pulmonary Fibrosis Advocates and the

of our staff and other advocates from the PFF

Coalition for Pulmonary Fibrosis, the Foundation

community traveled to Capitol Hill to meet with

helped acquire the support of 71 co-sponsors in

legislators and gain support for the PFREA.

the House and 13 co-sponsors in the Senate.

2011 ANNUAL REPORT

expanding community It is through the actions of those impacted by pulmonary fibrosis — and the passionate, dedicated advocates who share their stories with the world — that strides in raising awareness are made. Songs for Mike: A Benefit Evening Honoring Michael Kuchwara tells such a story. Julie Halston, renowned Broadway actress, already intimately knew the dire implications of a diagnosis of idiopathic pulmonary fibrosis (IPF) when she heard that her friend Michael Kuchwara had the disease. Julie’s husband, radio personality Ralph Howard, underwent a lung transplant due to IPF in 2010. Now Julie was touched by this devastating disease a second time.

PULMONARY FIBROSIS FOUNDATION

Michael Kuchwara’s story is like that of so many others. With no previous illness, the disease struck Mr. Kuchwara unexpectedly and in the prime of his life. He had been the Associated Press theater critic for many years and was widely respected and loved by those in front of, and behind, the Broadway curtain. His death in May 2010 from complications of IPF was a shock to

New York’s theater community and Julie Halston’s call to action.

Hosted by Julie with her impeccable wit and comedic skills, Songs for Mike was held at New York’s renowned jazz club Birdland on February 28, 2011. A tremendous success,

Julie had never heard of pulmonary fibrosis

the night featured over a dozen Broadway stars,

before her husband’s diagnosis and she was

and culminated with a surprise appearance by

Songs for Mike was just the first of what is now an annual Broadway-

stunned to hear that Michael Kuchwara also

Broadway legend and movie star Liza Minnelli.

inspired signature event for the Foundation. It will continue to bring people

suffered from the disease. To honor the memory

Songs for Mike raised $40,000 for the Michael

together in this fight and move our shared cause forward. We thank the

of her dear friend, and to raise awareness of the

Kuchwara Fund benefitting the Pulmonary Fibrosis

dedicated volunteers who tirelessly work to increase awareness of the

disease, she collaborated with mutual friends

Foundation, and enhanced the Foundation’s

disease and raise money to fund support services and research.

D. Michael Dvorchak, Ed Windels, and Sue Frost

work to spread much needed awareness of this

Together we will help find a cure.

to create a musical tribute to Kuchwara. Michael’s

little-known disease.

memory in an evening of song that showcased the music he loved so much.

PHOTOS BY CHRIS OW YOUNG

friends, and the stars of Broadway, honored his

2011 ANNUAL REPORT

Thank you to all of our donors for investing in us. 2011 SUPPORTERS $100,000+

RS Family Trust

$2,500–$4,999

Frank Sica

Paul & Susan Bergna

Sandra & Thomas Kully

Richard & Robin Schottenfeld

Anonymous

Sioux Falls Area Community Foundation

William J. Boucher

Charles & Monica McQuaid

Thelma K. Stephenson

Alice C. Petinge Memorial Fund

Stromedix, Inc.

Sally Boyer

Gerda Tighe

American Recycling &

Sue Tarr

David Brown

Lisa Tighe

Thomas & June Butkovich

$10,000–$99,999 Acra Aerospace, Inc. Donald Bickel Boat Works Bar and Grill Boehringer Ingelheim Pharmaceuticals, Inc.

Campbell Scientific, Inc.

Judy Tighe Dooley

Caffarelli & Siegel Ltd.

Ziff Brothers Investments

William Clotworthy, Jr., MD

John Tighe II

Angelina Caldwell

Daryl and Steven Roth Foundation

Patricia Townsend

Michael & Nancy Callahan

Disney Worldwide Services, Inc.

Stephen A. Wald, PhD

Susan Campbell

Paul Fogelberg

Washers for Wellness

Catholic Communal Fund of

$5,000–$9,999 Elissa Aronwald Sandra Bean Lewis

Coalition for Pulmonary Fibrosis

George Bergna

Phyllis Demont

Broadway Cares/Equity Fights AIDS

The Gordon & Llura Gund Foundation

Stephen Bunzl

Thomas & Alice Hales

Cheryl A. & John M. O’Meara Charitable Foundation

InterMune

Pamela Choney

Jenny H. Krauss & Otto F. Krauss

GE Foundation Matching Gifts Program

Charitable Foundation JP ’s Peace, Love, & Happiness

Foundation

Suzanne Gylfe The Joan N. and Francis M. Austin, Jr. Foundation, Inc.

Pete DeVito Memorial Foundation

John Larmer

Promedior, Inc.

Patterson Companies, Inc.

Respiratory Health Association

Rail-Splitter Capital Management, LLC

of Metropolitan Chicago The Robert J. Gunterberg Charitable Foundation Daniel M. Rose, MD Selma Rose

PULMONARY FIBROSIS FOUNDATION

Manufacturing Co., Inc.

William A. Inglehart Revocable Trust

Booz Allen Hamilton

Henry M. Staley Charitable Trust

Tighe Logistics Group

Lawrence Rosenzweig Romalda Schwed Sally Willis

Jennifer A. Galvin, MD Michael C. & Donna Henderson Ikaria, Inc. ImmuneWorks Jennifer Marie Jardine John & Dolores Kent Maxine Kent Callinan Wade Lange Chuck Lawless / The Lawless Team, Mesirow Financial Warren & Denise Loveland Nederlander Organization, Inc. Sonny & Dana Nuccio Julia Willis O’Connor Vania & Barbara O’Connor Pacific Northwest Friends of the PFF Carl & Teresa Salzano The Shubert Organization, Inc.

$1,000–$2,499 Robert Abrams Alamance Force Volleyball Club Barbara Albert The Allstate Giving Campaign ( NJ ) American Society for Quality Ameriprise Financial Employee Giving Campaign Anna M. & James L. Kirk Foundation, Inc. Robert Arnold Avon American Legion Post 145 B2B Marketing Group, Inc.

Bonnie Bannister Michael & Colleen Barbarita Beth Bearance Harry Beardsley Bellingham Elks Lodge #194 Daniel Beren, Esq

the Archdiocese of New York Richard Chambers Chicago Area CFC Children’s Network Corporation Jo Carol Clark Clemons Builders Clyde & Anita Becker Foundation, Inc. Sandra Cohn & Family Bernard Costello Andrea Coughlin-Rubio Cushing & Dolan, P.C. John Daly Verdell Daniels Lance & Diane Darga Kathryn Davis John M. DeMichaelis & Family Ronda Dorchester Educational Data Systems, Inc. Marlene Embry

supporting growth

Austin Esecson

Michael Hupy

George Etzweiler

IBM Employee Services Center

Brandy Fanter

Mary Jack

Fidelity Charitable Gift Fund

Herbert Janick, PhD

Sonal Patel

Mike & Leanne Storch

$500–$999

George & Heather Fischer

Chuck & Becky Karlan

Phillips-Van Heusen Foundation, Inc.

Merlin Swackhamer

Amaury Acosta

Five Star Mechanical Corporation

Michael & Linda Keston

Mark Plourde

Claire Tardy

Jennifer Adams & Family

Foley Foundation

James Kuchwara

Puglisi Classico Ltd. Inc.

John Tonner

Cynthia Ajilore

Clifford Forlines

David & Saundra Landsburg

Pulmonary & Critical Care Services, P.C.

Trilogy at Vistancia

Natalie Allen

Former Clerks & Staff of the Honorable

Alan Lazzard

Debbie Purcell

Roger Lee

Kathleen & Tom Reed

Thomas Lehrer

Mike & Maureen Reed

Jonathan Locker

Jim Demasi & Mary Reghetti

University of Rochester

Representative Brian Baird, PhD

Chuck & Char Fowler

Kitty Lopez

John Rickert

Unum Group

Richard & Sharon Bartley

Herbert Gedge

M.J. Murdock Charitable Trust

Becky Riddle

John Valenti

Rebecca Bascom, MD, MPH

Girlfriends Charity Christmas Auction

Mayo Clinic

Franklin Rose, MD

Doris Virden

Belle Battista

Gordon and Betty Moore Foundation

Art McCoy

The Royalty Trust

Scott Stiglitz & Pam Visser

Bay Area Medical Center

Genevieve Grayeski

Medical Anesthesiology Associates, P.C.

Schwab Charitable Fund

H.R. Wainwright

The Bay State Federal Savings

Great Friends Charities

Microsoft Matching Gift Program

Alan & Pam Schwed

Milton Walsey

Vikash Gulati

Stephen Monas

Chaye Shapot

WB-BR Kiwanis Foundation

Bernice Bechard

Lisa Hardiman

Monroe Wheelchair

Ray Shelmire

Welsh Charitable Trust

Shirley L. Becker

The Hart Family – Orepac Foundation

Charles & Elise Morris

David Sherry

The WGR Foundation

Ross Berbeco

Curran & Majorie Harvey

Richard Nelson

Harold Slagle

Roger Wilander

Michael Bettis

Carla Helaszek

Night Gallery Bar

Carol Smith

Rufus & Sheila Williams

Paul & Linda Bickel

Veronica Herek

Robert O’Meara

Warren Smith

Jonathan Witt

Timothy S. Blackwell, MD

Holson Family Foundation

Carol Paczkowski

So Hum Foundation

The Winfield Foundation

Gina Blea

Ruth Homan

Laura Palagyi & Family

David Spaulding

Rick Wollenberg

Caroline & Erik Bloss

Bill Hopfinger

Thomas Panaggio

Chris Spilios

Richard F. Zegarra, MD

Greg Blus

Horizon Hospice & Palliative Care

Nayankishor Pandya

Robert & Amy Starling

Steve & Bev Hossa

Raman Patel

Terence Evans Foundation for Art Research & Education, Inc.

Community Association Unitarian Universalist Westside Congregation

Elizabeth Ames Guy Armstrong Forrest Bailey

Charitable Foundation

Jean A. Boenitz Jagadish Boggavarapu

2011 ANNUAL REPORT

2011 SUPPORTERS $500–$999 (continued)

Marsha East

Buz Hoffman

Meredith Mann

William Perpich

Chris Boneau

Robert East

Hans Holland

Todd & Caroline Marchant

Peru Pharmacy, Inc.

Kevin K. Brown, MD

Helen Entrican

Charles & Jody Howard

Mariani Nut Company Foundation, Inc.

Deana Peterson

Adrian Bryan-Brown

Dan & Terri Evered

Indiana Council of Community

James Martin

Dorothy Phipps

MaryAnn Buttweiler

Louise Ewing

Matthew Henson School National

Pitney Bowes Software, Inc.

Caesars Entertainment Operating

Jeffrey Farnsworth

J. Reckner Associates, Inc.

Bob Feller

Mary Jackson, MD

Shawn McCallister

Thomas Postek

Calkins Electric Supply Co., Inc.

Heather Fergeson

The Janet & Tony Goldman

Florence McErlane

Proskauer Rose LLP

Harry & Kris Campbell

First Rate, Inc.

Margaret McKane

Proud Eagle, Inc.

Carrico Aquatic Resources, Inc.

Katherine Flahive

Karon Johnson

Johnny Mendoza

Kerin Rausch

Casella Waste Systems, Inc.

Katherine Frank

Monica Joshi

Merck Partnership for Giving

James & June Reed

CDW

James & Susan Galluzzo-Rosati

Paul Julien

Mesirow Financial

The Regence Employee Giving Campaign

Champlain Valley Physicians Hospital

Dave Delgado and Lisa Gammon

Michael Kamdar

David Meyer

RGL Consultants

Lisa Gardini

David W. Kamp, MD

Sam Michaels

David Riley, MD

George Chew & Family

Sandra Garfinkel

Anne Kampmeier

Edward & Carole Miller

Bryan Rogers

Terrence Chew, MD

Genentech Givingstation

Luanne Kane

John & Linda Miller

Art Ross

Jason Chien, MD

Wendy Gerber

Sharon Karlin

James Montano

Bill Rouine

Clark CARES Foundation

Give with Liberty Employee Donations

Ron Keil

Marci Moon

Mary Rouine

Lance Clark, Sr.

Goldman Properties USA , Inc.

Knight Automotive, Inc.

Jennifer Morgan

Steven Sahn, MD

Scott Cohen

Steven Gordon

Koppelman Family Foundation

The Mount Airy Knitters

Takefumi Saito, MD, PhD

Community Health Charities of Nebraska

Clifford Greene

Shimon Korish, MD

Brian Mozhdehi

Mitchell Schear

Esperet Corinne

Steve & Elizabeth Griffith

Jonnie Kuchwara

George Nauyok

Frances Schwindt

Gregory P. Cosgrove, MD

Haddon House Food Products, Inc.

Edward & Rose Kuhn

Terry & Diana Nelson

Valerie Scott

Coughlin/Rubio

Halliburton’s Giving Choices

John Lambert

Neshaminy Constructors, Inc.

Margaret Severson

CRW Parts, Inc.

Employer Match Program

Stephen Lanzendorf

Bobbi Newman

Wallace & Janet Sharp

Company, Inc.

Medical Center

Mental Health Centers

Take A. Risk Foundation

Junior Honor Society

Hope Plasha

Wendy Cubbon

Phillip & Irene Halper

Sandra Lehigh & Family

Allan Noddle

Tom Shen

Joseph DeGrazia, Jr.

Helen Jane Hamilton

Mary Lewis

Kurt Noyce

Patricia J. Sime, MD

Perry Deitrick

Sally Hansen

Thomas Link

Elizabeth & Michael O’Brien

Ann Smith

Thakor & Bharti Desai

The Haskell Company

LTD Truck Repair, Inc.

Joseph & Carolyn O’Leary

Cecilia Smith, MD

Gina DiBella

Steven Doloff and Susan Haskins

Edward & Sharon Luikaart

Thomas O’Riordan, MD

James Solomon

Peter Diconza

Hays Companies

Mary Lujan

Linda Osterman

Bill Sorenson

Jill Dion

Health Alliance Plan of Michigan

Melissa Lujan Ascencio

Judy O’Sullivan

Christina Soubrane

Carlinda Dirks

Christine Heckford

Barbara Lynn

Bert Oyama

Source Atlantique, Inc.

Anne Donahoe

Nancy Heitmeyer

Frank P. Maltese, Jr.

The Pastene Companies, Ltd.

Ken Spraetz

Gwenyth Duhn

Kathy Hockemeyer

Edward Mann

Rafael Perez, MD

Robert St. Germain

PULMONARY FIBROSIS FOUNDATION

St. Martin of Tours School

$250–$499

William & Mary Beargie

Michael Bushee

David Dalton

Ira & Pat Stein

ABARTA Oil & Gas Co., Inc.

Joyce Beck

Percy Calkins

Isabelle Dearmond

James Stoller

Advanced Animations, LLC

H. Douglas Bedinger

Rose Cannata

Jerome DeGroote

James Strohl

Patrick & Katy Ahern

Heather Behanna

John Capellupo

Timothy DeGroote

Brian Sullivan

Lori Ajmo

Rowland Bell

Linda Carpenter

L. Michael Delgado

Sunrise Commodities, Inc.

Thomas Akey, MD

Jean Bentel & Family

Marybeth Caruso

Samuel Delibert

Mary Ellen Supon

Patricia Alanis

Gidon Berger

Robert Case

Alfred & Susan Demaria

Mark Surber, MD

Ted & Irene Alessio & Family

Monique G. Bergeron

Viviane & Adam Cashman

Deutsche Bank Americas Foundation

Samuel Tambyraja, MD

Dwight Allbee & Family

Tamra Bernard Sanchez

James Cassata

Team Mossman Events LLC

Kari Alyea

Barbra Berry

Jessica Castle

Michael Deverell

Terrier Claims Services

America’s Charities Distribution Account

David Berzon, MD

Rosemary Cauley

Randee Dewey

Fred Thomas

Vinny Andaloro

Jila Bick

Mary Celenza

Barb Diggins

Leah Tobin, MD

Javier Apilanez Tomas, MD

Jack Bingleman

Herb Chain

Daniel Dilling, MD

Earl & Bunny Toledo

Arizona State University

Stephen Blacker

Andrew Chan

Anne Dimmock

Barry Blaine

Chevron Humankind – Matching Gift /

Diversified Information Technologies

Earle Traub

Alumni Association

Employee Funds

Matching Gifts Programs

Roy Tucker

John David Armstrong, MD

Robert Bloom, MD

U.S. IOL, Inc.

Terry, Lise & Len at MGO

Leonard Bologna

Terri Christenson

D.L.S. Enterprises

Lionel Doss

United Way of Allegheny County

Arrow Exterminators

Boston Capital Foundation

James Chuck

Elliott Dowling

United Way of Delaware

Autumn Village, LLC

Jennifer Bottalico

Raymond Ciccarelli

David & Mary Druker

Universal Orlando Resort

Roobina Baghoomians

Kent Bowman

Jose Cisneros

Drywall Unlimited Corp.

Voco America, Inc.

Dale Baird

Williamson Bradford, MD, PhD

Julie Clark

Marlo & Vernetta Dummann

Michael Wade

Peter & Susan Baker

Laurie Brewster

Karen Clark

Gary Dunham

Warner Manufacturing Company

Diana Bamford-Rees

Bridgeport Hospital, CT

Ron & Ann Clark

Kevin Dushay, MD

Howard Watt

Masashi Bando

John & Kendra Bridges

John Cole

Lynda Dutton

Charles & Karen Westphal

Bank of America

Dorothy Brooks

Harold R. Collard, MD

Steve & Marivern Easton

James & Brenda White

Bob & Mary Beth Barber

Annette Brown

Rany Condos, MD

Eileen Eberhart

Mary Wieteski

Bettylou Bargo

Brown Deer Seniors Golf Club

Margaret Conlon

Katarine Egressy, MD, MPH

Judith Williams

Cathy Barr

Donna Brucoli

Thomas & Mary Cooley

Elizabeth Elliott

Jennifer Wilson

Bill Bartholomew

Tedryl Bumpass

Phillip & Kathleen Cooper

Hal Elsasser

Lynn Witowski

Rona Bartholomew

Sybil-Ann Burgess

Michael Corn

Emerald Society MTA – NYC Transit

Julia Yaeger

Peter & Susan Barylski

Lisa Burke

James Couser, MD

Employees of Clayton Group

Thomas Youngs

Steven Basile

Joseph Burkhart

Cowan Community School Corporation

Steve Zeiger

Baxter Employee Giving Campaign

Linda Burkly

Judy Crandall

James English

Joseph Zibrak, MD

Cyndi Beach

Stanley & Sherri Burton

Csilla Csoboth, MD, PhD

Kristi Esker, FNP

Lillian K. Zuckerman

Edward Beach

Charles Busch

Beverly Cudmore Kraus

Sally Etz

& Vantage Finance

2011 ANNUAL REPORT

2011 SUPPORTERS

$250–$499 (continued)

Doug Goodman

Jessica Hirt

Lisa Rubin Kates

Noel Lambert Morrissey

Susan Evers, RN

Eduard Gorina, MD

Jennifer Hodge

Michael Kavanaugh

David & Kathryn Langevin

Cheryl Ewart

Starr Graff

Jack Hogg

Pat & Pam Kearney

John & Margaret Langford

Jerome Facher

Meg Grant

Bob & Marti Hopper

Jan Kelly

Joseph Lasky, MD

Elizabeth Fagan, MD

Susan Gravelyn, MD

Michael Horton

Richard Kelly

Stephanie Lau, MD

Leslie Farolan

Deborah Green

Riley Howard

David Kelso

Bobbie Lawson

Jacob Feinstein

Sue Greninger

HSBC Philanthropic Programs

Donald & Nancy Kennedy

Jacques Le Sourd

Robert & Nancy Feldman

Ted Gronski, MD

Jay Kenney

Terrie Leake

Edward Felter

Grotto Pizza

David Kim & Jin Hu

Kenneth Kerr

John Leavey

Scott Fineron

Michael Grupka

Howard Huang, MD

Dolly Kervitsky, RCP, CCRC

Joyce Lee

Employees at First Quality Nonwovens

Rae Ellen Gutrich

John Hunt

Sanjay Keswani, MD

Lenox Hill Hospital

Sean Flanagan

Dan & Meg Hack

Hemingway Huynh

Nasreen Khalil, MD

Colm Leonard

Fluor Employee Giving Campaign

Haddon Renal Medical Specialists

InCryo Systems, Inc.

Daniel Killinger

Menasha Corporation

FM Global Foundation

Larry Hagfors

Bill & Margaret Ismon

Jim Killinger

Melissa Fogelberg

Suzanne Hale

Jane Jackman, MD

Matthew Killinger

Deborah Lewis

John & Nancy Foppiano

Debby Ham

Steven Jackman, MD

Scott Killinger

Jeffrey Lieb

Jessa Ford

Mark Hamblin

Jackson National Life Insurance

Hyun Kim

Gregory Liedtka

Patrick Fowler

Becky Hamilton

Ross & Janet Kimmerle

Vincent Lombardini

Franks ‘N’ Dawgs

Jarmilka Hanek

Katherine Jahnes

Gary Kindt, MD

Roger Long

Eleanor Freeman

James Hanna

Jim & Jean James

Jeffrey & Heather King

Craig Longfield

Liv Margareth Cook Froiland

Gerhard Hannig

The Janus Foundation

Shirley King

Kathryn Lucas

Kimberly Ganley

James Haran

Mark Jaros

Talmadge E. King, Jr., MD

Todd Luczak

Patricia GaNun

Randall Harris, MD

Sharon Jenkins

Kiwanis Club of Hampton – Midtown

Jamson & Katherine Lwebuga-Mukasa

Tricia GaNun Guyon

Brad Hart

Jim Jordan & Associates, LP

Elizabeth Klein

Cheryl Lynch-Brady

Christine Kim Garcia, MD, PhD

Jeffrey Hartung

JMJ Consulting, Inc.

Leila Klein

Marco Polo Macias, MD

Jeffrey Gaus

Dean Haskins

Christopher Johnson

James Knoble

Debbie Macomber

Felecia Gelvin

Maryann Hatfield

Oscar Johnson

Rupert Koblegarde

Joyce Magnus

Mary Alice Gerhardt

John & Patty Hebert Agnew

Johnson & Johnson

Andrea Kopsa

Gary Malasky

Barry & Merle Ginsburg

Gary & Linda Henderson

Kay Lynn Kretchmar

Dawn Malatia

David Gioiella

Jeff Henderson

Pat & Bob Jones

Barbara Krongel

Bradley Malkus

Sharon Gjertsen

Mary Hennessy

Claude Jourdan Le Saux

Evadna Kronquist

Antoinette Mandich

Peter Glazer

David Herder

Scott & Rebecca Kaiser

Barbara Krugh

Peter Marchant & Family

Global Impact

Laura Highmark

William Kane

Tom Kulczycki

Charles Marchese

Jeff Golden, MD

Monika Hill

Kaplan Career Institute

James Laev

Amy Margolis

Elizabeth Gonzalez

John Hilliker

Robert Karman, MD

Timothy Lally

John Marhoefer

PULMONARY FIBROSIS FOUNDATION

Matching Gift Program

Company

Matching Gifts Program

Leverage Point Media

Alicia Martin

Anne Minnich

Andre Maske

Renee Minogue

MasterBrand Cabinets, Inc.

Sandy Mohan

Eva Mate, MD

Oracle Corporation

Allan Reagan

Mary Beth Scholand

REIT Management & Research LLC

Marty Schubilske

William Osterbauer

Richard Gray Gallery

Katherine Schwandt

Roger Monks

Rupak & Srividya Pandya

Richard T. and Kirsten E. Liebhaber

Donna M. Schwartz

Mary Beth Mateer

Jason Montano

Claudio Pasquinelli

Peter Matson

A. Bruce Montgomery, MD

Matthew Enterprises, Inc.

Matching Gifts Program

Family Foundation

Helen Schwartz

Daniel Patricia

Thomas Richards, PhD

Eileen Scoville

Deborah Morgan

Carolyn Paulson

James & Melissa Rinzler

Luis Septien, MD

James & Joanne Mattiucci

Carmen Moure

James Pearl, MD

Patton Roark

Paula Severson

Juan Antonio Mazzei, MD

Maria Moure

Ruth Peck

Alexa Robbins

Anita Shah

Mariano Mazzei, MD

Ronald Mundt

Sanaz Pentz

Ken & Carol Roberts

Steve and Linda Shaw

James McArthur

Eric Munro

Carlos Pereira

Pedro J. Marcos Rodriguez, MD

Barry Shea, MD

Tracy & Sheryl McAtee

Thomas Munzel, MD

Tamra Perez, BSN

Anne Romano

Ronald Shellan

Ed McCarthy

Murphy’s Bar

David Perlman, MD

Stephen F. Rooney

Anthony Shen

McCormack Distributing Co.

Ellen Muzi

Kathleen Perpich

Anthony & Christina Rose

Adrian Shifren, MBBCh

Ross & Elisabeth McCoy

Bruce Myers

Catherine Persichini

Eric Rosencrans

Sue Shoemaker

Kathleen McDougall-Lowe

Anoop Nambiar, MD

Peru Central School Federal

Bruce Rosenzweig

Cara Schillinger

Rob McFadden, MD

Marian Nasgovitz

Barbara Ruff

Revati Shreeniwas, MD

Robert McIvor

National Philanthropic Trust

Jay Peters

Heather Runnette

David Shukis

Lisa McKelvie

E. Robert & Phyllis Newman

The Pfizer Foundation

Marilyn Russell

V. Irene Siano

James McLellan

Murray & Sherry Newman

Tonya Russell, MD

Richard Siegel

John McMichael

Guy & Rebecca Nielsen

Diane C. Pirner

Bill & Cathy Ryan

Paul Simonelli, MD

Karen Medema & Family

Diane Nielson

Phillip Plante

John Ryan

Nicholas & Laura Skadsberg

Medical of Dubois, Inc.

Richard Nielson

Drew Pomerance

Maureen Salitis

Kevin & Becki Slanicky

Medical Staff at the Vista

Rondiene Novitz

Ken & Sue Poorman

Andrea Sambatti

William Slattery

Reeva Nowitz & Family

Seth Porter

JoAnne Samila

Marilyn Smith

Paul & Peggy Meillier

Courtney Nuccio

Jose Portugal

Donald & Elizabeth Sands

Tommy & Julie Smith & Family

Joseph Meindl

Noel Nutting

Steve & Glynis Potts

Rosemary Schatzman

Steven Solimano

Keith Meyer, MD, MS

Sean O’Quinn

Alan & Sandra Pratt

Patricia Schick

The Smeltzer Companies, Inc.

Middle Tennessee State University

o2totes

Heidi Prestash

Kevin Schiffler

Stephen Spalding

Obermayer Rebmann Maxwell

William & Linda Price

Kathleen Schlenker

Christopher Spaulding

The Private Bank

Rozsa Schlenker-Herceg

Heike Specht

Health System

Dept. of Chemistry Patricia Mikes, MD

& Hippel LLP

Credit Union

Matching Gifts Program

Cathi Miller

Marwan Obid, MD

Pulmonary & Allergy Associates

Ron & Jackie Schmid

Paul Spillane

David Miller

Carol O’Donnell

Sarah Ramey

Schneider Packaging Equipment Co., Inc.

Joseph Squicciarino

David L. Miller

Steven Olmsted

Range Resources Corporation

Robert Schnieders

Terry St. Germain

Michelle Miller

Jennifer O’Neill

RE/MAX North Country

Bradley & Christine Schofield

Mark Stanley

2011 ANNUAL REPORT

2011 SUPPORTERS

2011 TEAM PFF EVENT COORDINATORS

$250–$499 (continued)

United Way California Capital Region

Daniel & Kimberly Stargatt

United Way of New York City

Scott Staszak

University of Chicago

Elsie Yardley

Squirrels Bacanskas & Terpnuts

Richard Vander Horst

Justin Yee

Paul Venizelos, MD

Harvey & Donna Yost

Ruth LaClair

Jeff Kramer

Viele, Solimano, Swagler,

Robert Young

Barbara Murphy

Jack Lim

Statler & Family Betty Stephens Angela Stephenso

& Chapman CPA s

at Global Crossing

Claudette Zaccardi

Stonebridge Women’s Club

Village Bank

Christine Zarndt

Jerry & Suzanne Stott

Steve Virden

Larry & Sandy Zentz

Kathy Strandboge

William & Catherine Vollmer

ZF Industries, Inc.

Claire Stull

Elliot & Joan Walsey

Yingze Zhang

Sturdy Savings Bank

Eugene Walter

Cathi & Dave Zotter

Collette Sullivan

Guifang Wang

Edward E. Zwig

David & Mary Sullivan

Kathleen Ward

Von & Barbara Summers

Alan Watson

Krishna Sundar

Richard Watson

T & R Black’s Hardware, Inc.

James Watt

Andrew Tager, MD

Marian Watt

Sara Talley

Mike Watt

Arunabh Talwar

Jennifer Watters

Carolanne Tarby

Leslie Watters, MD

Emilia Theodoridou

Patricia Webb

Roger & Jan Titus

David Weiner

Town & Country Ford, Inc.

Peter Werner, MD

TSBL Distributing

Lewis Wesselius, MD

William Tsoi

Ralph White, MD

Hollis Tucker

Thomas & Stathy White

Neal Tully

Mark & Vickie Wilchinsky

Patti Tuomey, EdD

Jonathan Wilde

Harry Turvey

W.R. & Darlene Willard

Unilever United States Foundation, Inc.

Janice Wilson

United Consulting

Brent Winston

United Health Group ( NJ )

Deborah Witt Melanie Wolfe

Worldwide Carrier Services CFU

PULMONARY FIBROSIS FOUNDATION

$25,000–$49,999

$500–$4,999

Nick DeVito

Joseph DeGrazia, Jr.

D. Michael Dvorchak, Sue Frost,

Brenda Harvieux

Julie Halston, & Ed Windels

$5,000–$24,999 Debbie Adams Cindy Chandler Justin Domingos Robert & Jackie Fiorillo First Midwest Bank Liz Griffith Cheryl Hampton

2011 IN-KIND SUPPORTERS Booz Allen Hamilton Bulldog Bakery Dan Development Foiled Cupcakes Hogan Lovells Sandra Bean Lewis Lincare Kate Magrino, MA , LCPC Microsoft Susan M. Murphy National Jewish Health ProVideo Jesse Roman, MD Squigs’ Ink The France Foundation Timre Surrey Photography Wodka Vodka

Luanne Kane & Connie Kleinfelter Deb Lewin Sonny & Dana Nuccio

Jerry McClellan & Ted Keller

Joseph Lore, Jr. Melissa Lujan Ascencio Margo Miller & Marci Moon Donna Mullins Mary Novel Jimmy Pelletier Courtney Firak & Michelle Peters Jasmin Powell Scott Stiglitz & Pam Visser Karen Wesphal Dave Willacker

Kelly Partenheimer

$300–$499

Kim Perry

Joe Bonavita

Cindi Petri-Hendry

Nancy Neil

Judy Smith

Alicia Vasquez

Stephen Spahr Nancy Liva & Michelle Sullivan Lisa Tighe Tammy Walker Elliot Walsey Beth Walsh

2011 CORPORATE GRANTS Amira Pharmaceuticals, Inc. Gilead Sciences, Inc. InterMune

Financial Summary

3% INVESTMENT INCOME 3% PROGRAM SERVICE FEES 16% FUNDRAISING

8% OTHER REVENUES

14% MANAGEMENT

STATEMENT OF FINANCIAL POSITION

AND GENERAL

AUDITED NUMBERS

Total Assets Total Liabilities

2011 2010 3,511,296 3,555,331 152,316 23,147

Total Net Assets

3,358,980

3,532,184 70% PROGRAM SERVICES

86% PUBLIC SUPPORT

STATEMENT OF ACTIVITIES

ALLOCATION OF 2011 EXPENSES

SOURCES OF 2011 REVENUE

AUDITED NUMBERS

Public Support Program Service Fees Other Revenues Investment Income

1,950,159 70,555 178,277 56,123

86% 3% 8% 3%

Total 2011 Revenue

2,255,114

100%

Total Revenue Unrestricted Temporarily Restricted Total Expenses Loss on disposal of property and equipment Change in Net Assets

2011 2,157,840 97,274

2010 1,659,871 (5,000 )

2,255,114

1,654,871

2,425,673

1,137,471

(2,645 )

(173,204 )

517,400

Program Services by Category Advocacy 122,676 Physician and Patient Education 119,480 Research 364,254 Affiliates 25,745 Patient Outreach 114,450 Registry 25,084 Summit 913,718 Program Services Total Management and General Fundraising

1,685,407 70% 348,943 14% 391,323 16%

Total 2011 Expenses

2,425,673

100%

2011 ANNUAL REPORT

MEDICAL ADVISORY BOARD Kevin K. Brown, MD*

STAFF

CHAIRMAN

Daniel M. Rose, MD* PRESIDENT AND CEO

Patti Tuomey, EdD* CHIEF OPERATING OFFICER

Joseph Borus, Esq*

Daniel M. Rose, MD

David W. Kamp, MD

PRESIDENT AND CEO

MEDICAL DIRECTOR

Patti Tuomey, EdD

Jesse Roman, MD* CHAIRMAN, RESEARCH ADVISORY COMMITTEE

Dolly Kervitsky, RCP, CCRC

Marvin I. Schwarz, MD

VICE PRESIDENT, PATIENT REL ATIONS

PAST CHAIRMAN

Cara Schillinger

Timothy S. Blackwell, MD*

David Lynch, MD

Jeffrey T. Chapman, MD

Fernando J. Martinez, MD, MS*

COMMUNICATIONS AND MARKETING

TREASURER

Harold R. Collard, MD

A. Bruce Montgomery, MD

Scott Staszak

Ritu S. Baral*

Rany Condos, MD

Imre Noth, MD

CHIEF FINANCIAL OFFICER

Daniel Beren, Esq

Gregory P. Cosgrove, MD

Ralph J. Panos, MD

Jennifer A. Galvin, MD

Aryeh Fischer, MD

Ganesh Raghu, MD

Jennifer Bulandr

Courtney Firak

Michael C. Henderson*

Christine Kim Garcia, MD, PhD

Luca Richeldi, MD, PhD

DIRECTOR,

COORDINATOR,

COMMUNITY AFFAIRS

SUPPORT SERVICES

Daeshawna Cook

Meredith D. Mann

COORDINATOR,

DIRECTOR,

COMMUNITY EVENTS

RESOURCE DEVELOPMENT

SECRETARY

Thomas E. Hales*

Sandra Bean Lewis

Andreas Günther, MD

Glenn D. Rosen, MD

Julia Willis O’Connor

Susan S. Jacobs, RN, MS

Patricia J. Sime, MD*

ASSOCIATE VICE PRESIDENT,

AND ASSOCIATE VICE PRESIDENT, INFORMATION TECHNOLOGY

John Ryan

Naftali Kaminski, MD*

David A. Schwartz, MD*

Carl Salzano

Joseph Lasky, MD*

Moisés Eduardo Selman Lama, MD

Zoë Dirks

Amanda B. Miller

Stephen A. Wald, PhD

Andrew H. Limper, MD*

Charlie Strange III, MD

SENIOR PROJECT MANAGER

COORDINATOR, DEVELOPMENT

Matthew C. Williams

Kathleen Lindell, PhD, RN

Robert Strieter, MD*

Wendy Escobar

Elizabeth Price

Jeffery J. Swigris, DO, MS

COORDINATOR,

MANAGER, DATABASE

FINANCIAL OPERATIONS

ADMINISTRATION

James E. Loyd, MD* *E XECUTIVE COMMITTEE

Janet Talbert, MS, CGC *RESEARCH ADVISORY COMMITTEE

CHIEF OPERATING OFFICER

PULMONARY FIBROSIS FOUNDATION

DESIGN: BOCKOS DESIGN, INC.

BOARD MEMBERS

The mission of the Pulmonary Fibrosis Foundation is to help find a cure for idiopathic pulmonary fibrosis, advocate for the pulmonary fibrosis community, promote disease awareness, and provide a compassionate environment for patients and their families.