scleroderma_annual_report_web final

YEAR-END UPDATE 2015
Founded in 1987 with a
passionate commitment that lives on:
to use the power of
collaborative medical research
to advance a cure.

A TRANSFORMATIVE YEAR
LETTER FROM THE CHAIRMAN
A Year-End Message From Dr. Luke Evnin, Chairman of the Board of Directors
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Promising new projects
A collaborative, multicenter study is being led by Dr. Francesco
Boin at the University of California, San Francisco, and Dr. Fredrick
Wigley at Johns Hopkins, in collaboration with Dr. Dan Kastner,
Scientific Director of the National Human Genome Research
Institute.The project known as GRASP, the Genomic Research in
African-American Scleroderma Patients, began in mid-2014 (and
was originally conceived at the SRF Annual Research Workshop) and
has made remarkable progress since our last update. With the goal of
discovering scleroderma-associated genes that are linked to disease
susceptibility and severity, this study is enrolling patients across the
country at 19 sites. Results from this large-scale study of patients will
yield insights for all scleroderma patients and fuel further research.
Read more about this study on page 22.
Much of our progress is due to the SRF’s diverse spectrum of
investigators and their projects aimed at developing a greater
understanding of the underlying causes of scleroderma. In addition
to the new studies mentioned above, advances have been made on
several previously funded research projects, as you will see on pages 12
through 23. We are encouraged that our long-term investments are
paying off. We are particularly pleased with the progress taking place in
the labs of Drs. Hal Dietz, Howard Chang, and Michael Rosenblum,
and we have increased our support in order to accelerate their progress.
Dear Friends,
For the past 15 years, it has been an honor to continue the Scleroderma
Research Foundation’s (SRF) mission of pursuing new treatments
and a cure for scleroderma. I am pleased to report that the SRF
continues to lead the way toward a cure. From the advancement of
our research program, to evolving the organization’s leadership, to
deepening partnerships with industry and expanding awareness-
building efforts, it has been a transformative year for the SRF. Most
importantly, we continue to grow our network of generous supporters
like you.Therefore, I would like to thank you and highlight some of our
achievements and my optimism for what the future holds.
But first, I will share that the SRF experienced a great loss this year
with the passing of Jeff Mace. Jeff, an SRF board member and one
of our community’s greatest champions, lost his 20-year battle with
scleroderma this past July. He was a friend, colleague, and advocate for
greater awareness and support for research. I am deeply grateful for
having had the honor of knowing Jeff and I know I speak for all of us
at the SRF when I say that he has left us with a greater purpose for
fulfilling our mission. His kindness, leadership, and sharp intellect will
be sorely missed.
A new project in the lab of Dr. Howard Chang at Stanford
University is exploring gender-specific gene regulatory networks in
scleroderma patient samples as compared to healthy volunteers. In
particular, Dr. Chang is focused on assessing the activity of the X
chromosome in female scleroderma patients. While women have two
X chromosomes, one is typically used. Dr. Chang is investigating the
body’s ineffective silencing of the second X chromosome, a potential
source of autoimmune disorders and cancer. With the additional
support from the SRF, Dr. Chang and his team have already uncovered
differences in autoimmune response between men and women, and
published initial results in Cell Systems. Perhaps most importantly,
Dr. Chang and his team have invented a breakthrough technique that
allows study of living cells in real time. Read more about Dr. Chang
and his team on page 10.
Two new studies are being led by Dr. Antony Rosen, Vice Dean
of Research and Director of Rheumatology at Johns Hopkins.The
first is an extension of his previous finding that scleroderma is in
some cases triggered by cancer.This project, in conjunction with
HHMI investigator (and 2015 Lasker Award Winner) Dr. Stephen
Elledge at Harvard, seeks to define novel autoantibodies and those
cancer mutations in scleroderma patients.The second will evaluate
autoantigens for possible targeting in a subset of scleroderma patients.
I invite you to read a more detailed description of these projects on
pages 17 and 18.
Advancing Research
I am proud to report that in 2015, we funded more than $1.5 million in
research projects, the largest single-year allocation in the Foundation’s
history. Also, we continue our track record of very careful stewardship
of the donations you entrust to us, with more than 85% of our annual
expenses devoted to program expenses.
The SRF allocates its research budget across three broad categories:
clinical, translational, and basic research. We commit 20% to clinical
endeavors, which include developing and sustaining Centers of
Excellence, such as the nation’s leading center at Johns Hopkins, and,
thanks to a gifted and dedicated team working together at Stanford,
we’re playing a big part in replicating that success on the West Coast.
The remaining 80% is put to work in basic and translational research
projects.These projects aim to develop more predictive animal models,
reveal the bad actors at work on a cellular level, and validate research
findings in human samples, all of which are critical to the next steps in
drug development. On this front, I’d like to share four new additions to
our portfolio.

that has been approved for rheumatoid arthritis and targets the
inflammatory cytokine Il-6) was born, in part, in meetings with
leadership at Genentech during the SRF Scientific Workshop.The
launching of this trial is another affirmation of the success of the
collaborative nature of our program.
As you may recall,the SRF recruited Dr.Hal Dietz to work in scleroderma
and has supported work in his lab over several years with tremendous
success and several publications. Recently,the work has attracted the
notice of several venture capital investors impressed with the importance
of his recent breakthrough.We are pleased to share that in the past year, a
company was formed,Blade Therapeutics,with a multimillion-dollar
investment to advance Dr.Dietz’s work–the SRF is encouraged to see this
magnitude of support and the opportunity to accelerate efforts to develop
a disease-modifying therapy from Dr.Dietz's discovery.
We wish all of our bold partners success in their endeavors.We look forward
to working with industry and to the impact that industry involvement can
have for our patients who remain in dire need of alternatives.
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Luke Evnin, PhD
Chairman, Board of Directors
Evolving Organizational Leadership
In addition to the expansion of our research program, the SRF has
undergone some important organizational growth. During the past
year, the SRF added three new members to our Board of Directors.
Each brings a unique perspective to the SRF, and we have already
begun to benefit from their insights.
Dr. Eric Kau is a Southern California-based physician trained
at NYU and at Cedars-Sinai Medical Center in Los Angeles. As a
physician and surgeon on the cutting edge of his field, he understands
the need for research and science as drivers of progress. Dr. Kau brings
to our board an abundant enthusiasm and a deep personal commitment
to a solution for scleroderma.
David Knoller is a highly accomplished and award-winning
producer and director, known for HBO’s Carnivàle (2003), Big
Love (2006), and Starz’s Power (2015). He is also a scleroderma
patient. After being introduced to the SRF in 2013, Knoller became
increasingly more involved and after serving on the 2015 Cool Comedy–
Hot Cuisine Los Angeles event committee, he made the decision to
join the board to maximize his impact and bring greater awareness to
scleroderma and the need for a cure.
Dan Welch is a renowned biotechnology executive and most
recently was president and CEO of InterMune. During his 11-year
tenure, the company courageously advanced Esbriet®, the first drug
for idiopathic pulmonary fibrosis (IPF) ever approved in the U.S. IPF
shares many characteristics with the pulmonary fibrosis that afflicts a
number of scleroderma patients. Welch brings a depth of knowledge
and expertise that will support the SRF as it seeks to further develop
partnerships with industry, as well as broaden awareness efforts.
Partnering with Industry
The SRF has a long history of fostering relationships with the
biotechnology and pharmaceutical industry to further our mission.
While insights into disease processes are essential for drug discovery
and development, the arduous and expensive road of bringing
treatments to market requires industrial capabilities. As a trusted
advocate, the SRF provides an entry point to the scleroderma space,
introducing companies to experts and facilitating next steps with
scientists and leading clinicians. In particular, our Corporate Partners
Program is the mechanism for us to engage industry, and we offer
companies that work in scleroderma not only research insights but also
insights about patient care and access to the patient community.
In part spurred by a better understanding of the underlying disease
biology, there has been increased interest and activity from industry in
scleroderma-related therapies. It is exciting to report that after years of
diligently laying the groundwork, we may bear witness to scleroderma
approvals for existing drugs, and to potentially new drugs for the
disease.
Right now, several drugs are making their way through the latter (II-
III) phases of clinical development, and one has received Breakthrough
Therapy designation from the FDA (tocilizumab). Roche/Genentech is
pursuing tocilizumab, Bayer is advancing riociguat, and Bristol Myers
Squibb is testing abacept, all with trials in excess of 80 subjects and
each pointing toward registration of the drug for marketing approval.
I would like to note our pride in the role the SRF played in the
progress of one of these drugs.The idea to trial tocilizumab (therapy
Building Awareness and Raising Funds
Our fundraising efforts were led by the SRF’s signature event, Cool
Comedy–Hot Cuisine, bringing with it much-needed scleroderma
awareness and funds for research. Events held in Las Vegas, New
York, and, most recently, Los Angeles combined to raise more than
$1.4 million that will be put to work at leading institutions around the
country. Looking forward, we will be back in San Francisco this spring
and will hold a second Las Vegas event in June 2016. My deepest
appreciation goes out to the amazing, gifted comedians, musicians, and
chefs who graciously donate their time and talents for a cure.
We remain committed to educating the scleroderma community.This
year brought new webinars to our growing library that is, and always
will be, a free service to help increase understanding of the disease and
the unique challenges faced by patients. In addition to the series, I am
proud to share that our Research Roundtable forums will kick off this
Winter in the Bay Area. Modeled after the success of the SRF webinar
series, each roundtable will feature panelists from scleroderma specialty
clinics, leading research institutions, and industry, and will provide time
for attendees to ask questions of the expert speakers. Read more about
this year’s events on pages 26 and 27.
These developments are concrete evidence of the progress that is
being made. More than ever before, I am convinced that Research
is the Key. Until a cure is found, we will continue to lead by funding
groundbreaking research, removing barriers, and enabling progress.
On behalf of my colleagues, thank you. With your support, we are
moving closer to a world without scleroderma.

RESEARCH IS THE KEY
The best way to help people living
with scleroderma is to invest in
the most promising research.
In 1987, Sharon Monsky founded the Scleroderma Research
Foundation with the belief that funding research was the
best way to impact patients suffering from scleroderma. She
devoted her life to that mission.Today, the SRF is America’s
leading nonprofit investor in scleroderma research. We
engage and unite exceptional scientists and clinicians across a
broad variety of disciplines to advance therapies and find a cure for this life-threatening illness.
With four new projects added to the 2015-2016 research portfolio, the SRF is positioned to
deepen and expand its knowledge. Some projects focus on the biological systems responsible
for scleroderma’s signature fibrosis, some are designed to develop tools that can transform
how scientists study cells and reactions in the body’s complicated systems, such as the immune
system, and others are designed to provide breakthroughs expected to usher in a new era of more
effective and more personalized treatment regimens.
Fostering collaboration is a principal tenet of the SRF research program. Creating an
environment that encourages open lines of communication among a multidisciplinary
community of scientists and clinicians maximizes efficiency, improves the quality of results, and
leads to new avenues of exploration and breakthroughs.
To expedite research discoveries, the SRF partners with industry and academia, investigating
the disease under a rigorous, peer-reviewed research program–encouraging investigators to share
unpublished results to more quickly facilitate the development of improved therapies.To further
expedite progress, the SRF goes beyond the laboratory to partner with world-class medical
institutions to advance the research responsible for improving patient care.
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KEYS TO SUCCESS
Fundamental
Discoveries
The SRF research program devotes the
greatest percentage of its research budget,
80%, to long-term fundamental discoveries
in biology, basic and genomic science, and
new technologies where SRF investigators are
creating a “GPS system” for navigating the
regulomic landscape of scleroderma with the
goal of reverse-engineering scleroderma down
to the molecular and genetic level.
Comprehensive
Care
Beyond the laboratory, SRF resources
develop and sustain the most advanced
scleroderma specialty Centers of Excellence,
where patients can receive comprehensive
care from physicians representing many
disciplines and specialties, clinicians can
partner with frontline scientists, blood and
tissue samples can be obtained, and the
next generation of experts can be trained to
develop and test new treatment strategies
and advance standards of care.
FOUNDER
SHARON L. MONSKY, 1953-2002
BOARD OF DIRECTORS
LUKE EVNIN, PHD, CHAIRMAN
KRISTEN BAKER BELLAMY
DANA DELANY
SUSAN FENIGER
ERIC KAU, MD
SAVILLE KELLNER
DAVID KNOLLER
BOB SAGET
DAN WELCH
DEANN WRIGHT
CARYN ZUCKER
KEY STAFF
AMY HEWITT
Executive Director
ALEX GONZALEZ
Director of Development
BRENDAN DOHERTY
Director of Communications
SCIENTIFIC ADVISORY BOARD
BRUCE ALBERTS, PHD
University of California, San Francisco
President Emeritus, National Academy of Sciences
JEFFREY A. BLUESTONE, PHD
DAVID BOTSTEIN, PHD
California Life Company (Calico)
SHAUN R. COUGHLIN MD, PHD
SUSAN DESMOND-HELLMANN, MD, MPH*
Bill & Melinda Gates Foundation
DAN KASTNER, MD, PHD
National Institutes of Health
REGIS B. KELLY, PHD*
HENRY METZGER, MD*
Scientist Emeritus, National Institutes of Health
ANTONY ROSEN, MD
Johns Hopkins University
WILLIAM J. RUTTER, PHD*
Synergenics LLC
BRUCE U. WINTROUB, MD
GEORGE YANCOPOULOS, MD, PHD
Regeneron Pharmaceuticals Inc.
THE SRF PROGRAM
*Emeritus

Bringing Thought
Leaders Together
Led by an esteemed Scientific Advisory
Board, the annual SRF Scientific Workshop is
a forum that brings together thought leaders
with expertise from multiple backgrounds to
broker the exchange of information and ideas.
The results of this intensive workshop are
new alliances and ideas that further develop
the roadmap for vital research that will bring
better treatments and a cure. In addition to
the Scientific Workshop, the SRF supports
the broader scleroderma research community
by supporting the International Scleroderma
Workshop, held this year at the Royal Free
Hospital in the United Kingdom.
Collaborative
Environment
Accelerating research discoveries requires
cooperative relationships between medicine,
academia, and industry. In a field that can
be fiercely competitive, the SRF creates and
nurtures an environment where the exchange
of ideas is leading to game-changing
discoveries. Removing barriers allows for
faster translation to patient care.
Aligning with the SRF’s collaborative
nature,this year the SRF became one of
19 organizations included in The Research
Acceleration and Innovation Network
(TRAIN),a FasterCures program that convenes
forward-thinking,results-oriented nonprofits
for the purpose of sharing novel ideas to
increase the development of new therapies.
UNLOCKING THE MYSTERY
Scleroderma is
A CONNECTIVE TISSUE DISEASE
A FIBROTIC DISEASE
AN AUTOIMMUNE DISEASE
Scleroderma is a chronic, complex, and debilitating disease–much
more than “hard skin,”as its name implies. It involves changes in
the skin, blood vessels, muscles, and internal organs. One of the most deadly of all rheumatic
disorders, scleroderma begins as an autoimmune attack, and after a variable period, the disease
often accelerates into either devastating fibrosis or crippling vascular damage. Depending on the
subtype of illness (e.g., localized, linear, systemic limited, systemic diffuse), scleroderma can damage
multiple organ systems, including the lungs, kidneys, and GI tract, often with life-threatening
consequences. Peripheral vascular damage is nearly universal and can result in loss of digits or
entire limbs. In other cases, the joints and muscles are affected, resulting in a loss of mobility and,
like other autoimmune diseases, extreme chronic fatigue.
Scleroderma most often strikes between the ages of 20 and 50, with women representing
approximately 4 out of every 5 cases. Still, the disease can affect anyone: men, children at any
age, and all ethnic groups. It is a rare disease, with many sources estimating 100,000 patients in
the U.S., and others suggesting more than double this number, inclusive of misdiagnosed and
undiagnosed patients.
The disease is not contagious, not hereditary, and currently has no cure. However, SRF-funded
scientists are on the fast track to discovering its underlying biology and new ways to stop and
reverse its damaging consequences.
Lung disease, the most common lethal complication, affects roughly 25% of patients,
predominantly with fibrosis called interstitial lung disease (ILD) or pulmonary arterial
hypertension (PAH), which is a result of high blood pressure in the arteries leading to the lungs.
5
SRF Projects Aim to
Quantify and understand the underlying
differences in immune system response
contrasting between men and women using
new epigenetic tools. As 4 of 5 scleroderma
patients are women, further understanding
of the differences in gene switching in
autoimmune response has significant
implications for autoimmune disorders and
scleroderma, leading to a more tailored
response from clinicians.
CHANG STUDY PAGE 12
Further investigate the groundbreaking
findings that scleroderma and potentially
other autoimmune disorders manifest as a
result of the body’s response to find and fight
cancer. Researchers are looking more directly
at the autoantibodies and associated cancer
mutations in scleroderma.
ROSEN AND ELLEDGE STUDY PAGE 18
Understand how mechanisms of a normal
immune system keep control over the
powerful system's response and, in particular,
regulatory T cells (Tregs). This cell type is
dominant, responsible for establishing and
maintaining immune tolerance in tissues.
Investigating and understanding these cells’
molecular mechanisms in skin fibrosis will lead
to a direct method to treat fibrotic diseases
like scleroderma.
ROSENBLUM STUDY PAGE 19
Identify the genetic factors and variants that
make African-American scleroderma patients
more susceptible to scleroderma, likely to
experience more severe clinical manifestations
and worse outcomes. Studying the genomes
of these patients will uncover markers that
will provide insight into scleroderma-specific
pathogenic pathways and identify novel clinical
therapeutic targets.
GRASP STUDY PAGE 22
Improve multispeciality care for scleroderma
patients at specialized centers where cutting-
edge technologies are used to study patient
samples. These discoveries are harnessed
to more effectively predict how a patient’s
disease may progress, which organs are
involved, and which treatments may have the
greatest benefit.
STANFORD CENTER PAGE 14
JOHNS HOPKINS CENTER PAGE 23

This Advisor is a member of the National Academy of
Sciences, the United States’ most highly regarded scientific
nonprofit organization. Since its founding in 1863 by
President Abraham Lincoln, National Academy of Sciences
members have served pro bono as “advisors to the nation on science,
engineering, and medicine.” New national academy members
are elected annually based on their distinguished and continuing
achievements in original research.
David Botstein, PhD
California Life Company (Calico)
Dr. Botstein is a renowned geneticist,
educator, and pioneer of the Human
Genome Project. He currently serves
as the Chief Scientific Officer of
Calico, a research and development
biotechnology company established in
2013 by Google Inc., with the goal of
tackling the aging process. Dr. Botstein served as the Director of the
Lewis–Sigler Institute for Integrative Genomics at Princeton University
from 2003-2013, where he remains the Anthony B. Evnin Professor
of Genomics. He was an esteemed professor and research scientist at
Bruce Alberts, PhD (Chair)
President Emeritus, National Academy
of Sciences
Dr. Alberts is recognized around the
world as a scientist and educator. He
served two terms as President of the
National Academy of Sciences (NAS)
(1993-2005), and was also Chairman
of the National Research Council at the NAS. Dr. Alberts is one of
the original authors of The Molecular Biology of the Cell, now in its
sixth edition, which is the standard cell biology textbook in most
universities. He served as Editor-in-Chief of one of the research
community’s leading journals, Science, from 2009-2013. In his third
decade of educating future scientists, he is the Chancellor’s Leadership
Chair in Biochemistry and Biophysics for Science and Education at
the University of California, San Francisco. Beginning in 2000 and
through 2009, he served as the co-chair of the InterAcademy Council,
an international organization established to provide scientific counsel
to the world and governed by the presidents of 15 national academies
of sciences. In 2009, Dr. Alberts was one of three leaders appointed to
serve as the nation’s first scientific envoy by Secretary of State Hillary
Clinton. In 2014, he was awarded the National Medal of Science by
President Barack Obama.
Jeffrey A. Bluestone, PhD
Dr. Bluestone joined the University
of California, San Francisco (UCSF)
faculty in 2000. He holds the A.W. and
Mary Margaret Clausen Distinguished
Professorship in Metabolism and
Endocrinology and is the Director
of the Hormone Research Institute.
In March 2010, he was appointed Executive Vice Chancellor and
Provost (EVCP) to serve as chief academic officer guiding the research
and academic enterprise at UCSF, advancing the campus priorities
in collaboration with the Chancellor and campus leadership. Dr.
Bluestone has also served as the Director of the UCSF Diabetes
Center, where he emphasized translating basic research in both type 1
and type 2 diabetes into improved therapies for patients. Dr. Bluestone
founded and directed the Immune Tolerance Network, a consortium
of more than 1,000 of the world’s leading scientific researchers and
clinical specialists. As an international scientist and leader in the
field of immunotherapy, his expertise has helped to clarify the body’s
immune response on a molecular level, and has catalyzed recent
progress in stem cell research, islet cell transplantation, and immune
tolerance therapies–studies that have been translated into drugs to treat
human disease.
MEDICAL RESEARCH LUMINARIESThe SRF Scientific Advisory Board (SAB) comprises some of the world’s most distinguished scientists who
volunteer their time and insights to guide the SRF research program. Their collective knowledge brings a
broad array of expertise across many disciplines, including genetics, autoimmunity, molecular biology, vascular
biology, dermatology, and inflammatory disease. The SAB is essential in directing the SRF research program to
new successes and new areas of investigation. Their deep personal commitment, independent judgment, and
ability to foster high-level scientific investigation are vital to the SRF research program.
6
SCIENTIFIC ADVISORY BOARD
These individuals play an integral role in fulfilling our mission. They are responsible for evaluating research
proposals and making funding recommendations that will increase our understanding of scleroderma,
advancing the science toward new treatments and a cure.

George Yancopoulos, MD, PhD
Regeneron Pharmaceuticals Inc.
Dr. Yancopoulos is Founding Scientist
and President of Regeneron Laboratories
and Chief Scientific Officer for
Regeneron Pharmaceuticals Inc. His
scientific efforts have focused on growth
factors, their mechanisms of action, and
their role in a wide variety of diseases.
His research group discovered the angiopoietins and the ephrins, new
families of growth factors that help mediate growth of blood vessels
and other cell types. Many of the discoveries of Dr. Yancopoulos and
his research group have resulted in therapeutic candidates now in
clinical trials, such as the VEGF-Trap for cancer and blinding eye
diseases, including AMD, and the IL-1 Trap for inflammatory diseases.
His research group has also developed an innovative set of technology
platforms that will greatly speed drug development. He has been
recently listed among the 11 most highly cited scientists in a survey by
the Institute for Scientific Information.
Shaun R. Coughlin, MD, PhD
Dr. Coughlin directs the Cardiovascular
Research Institute (CVRI) at the
University of California, San Francisco,
where he also holds professorships in
Medicine and Cellular and Molecular
Pharmacology. He is an expert in the
field of vascular biology and has led the
burgeoning field of thrombogenesis. Among his contributions, Dr.
Coughlin has identified a new family of protease-activated receptors
that are involved in a number of biological processes and have
important implications for the development of novel treatments for
atherosclerosis and pathologic events, including heart attacks and many
strokes. His discoveries have led to a greater understanding of how
platelets and clot formation are regulated, and how signals that control
inflammation of blood vessels are transmitted.
Dan Kastner, MD, PhD
National Human Genome Research
Institute (NHGRI)
Dr. Kastner is Scientific Director of
the NHGRI, where he oversees clinical
studies. He continues the quest for
genes underlying human disease by
the development and application of
advanced gene mapping and sequencing
technologies.The program aims to deepen our understanding of basic
biology, and to develop therapies based on new molecular targets. Prior
to his NHGRI appointment, Dr. Kastner was Chief of the Laboratory
of Clinical Investigation and Clinical Director of the National Institute
of Arthritis and Musculoskeletal and Skin Diseases, and Deputy
Director for Intramural Clinical Research at the National Institutes
of Health (NIH). His lab had an interest in human genetic disorders
of inflammation. He led an international consortium that identified
the gene causing familial Mediterranean fever (FMF) in 1997. And
in 1999, Dr. Kastner’s lab discovered mutations in a TNF receptor
responsible for causing a dominantly inherited periodic fever syndrome
similar to FMF, a discovery that has led to the successful use of anti-
TNF agents in the disorder. His team also established the association
of STAT4 polymorphisms with several autoimmune diseases and is
currently studying the genetics of Behçet’s disease. Dr. Kastner is the
recipient of the NIH Director’s Award, the Paul Klemperer Award
of the New York Academy of Medicine, the Lee C. Howley Prize for
Research in Arthritis from the National Arthritis Foundation, and the
NIAMS Mentoring Award.
Bruce U. Wintroub, MD
Dr. Wintroub is a distinguished
dermatologist and Vice Dean of Medicine
at the University of California, San
Francisco, where he also serves as Chair
of Dermatology and has a professorship
in dermatology. Dr. Wintroub was
formerly Assistant Professor of
Dermatology at Harvard Medical School. His research projects have
included pathogenesis of bullous (blistering) diseases, characterization
of human mast cell enzymes, and use of photopheresis in cutaneous
T-cell lymphoma, atopic dermatitis, and scleroderma. Dr. Wintroub is
Chairman, Board of Trustees of the Dermatology Foundation and is
very active in the area of health care delivery and management.
Antony Rosen, MD
Johns Hopkins University
Dr. Rosen is the Vice Dean for
Research and also directs the Division
of Rheumatology at the Johns Hopkins
University School of Medicine, where
he is also Deputy Director of Medicine,
the Mary Betty Stevens Professor of
Medicine, and a Professor of Cell Biology
and Pathology. His expertise and research focus on the mechanisms
of autoimmune diseases, with particular emphasis on defining the role
of autoantigens in rheumatic diseases such as scleroderma, lupus, and
arthritis. He has overseen a significant expansion of the Division of
Rheumatology at Johns Hopkins University, nearly doubling the faculty
size. Dr. Rosen continues to be highly successful in recruiting and
mentoring the next generation of clinical and translational investigators
who are dedicating their careers to research that will provide new
treatment options for patients living with rheumatic diseases. His most
recent landmark paper published in the leading journal Science provides
evidence that a certain cancer mutation may trigger scleroderma.
In addition to his substantial research efforts, Dr. Rosen is a skilled
clinician who is deeply committed to caring for his patients.
the Massachusetts Institute of Technology for two decades. He then
served as Vice President for Science at Genentech Inc. for two years
before joining the faculty at the Stanford School of Medicine, where
he chaired the Department of Genetics. Dr. Botstein is known for
his use of genetic methods to understand biological functions and
systems. His insights into human gene mapping 25 years ago helped
lay the foundation for the Human Genome Project. Among the many
accolades for his work on the Human Genome Project, in March 2013,
Dr. Botstein received the Breakthrough Prize given by the Life Sciences
Foundation. In April 2010, he was awarded the Albany Medical Center
Prize in Medicine and Biomedical Research. Often lauded as “America’s
Nobel,”this is one of science’s most prestigious awards.
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PROJECT PORTFOLIO
8
2015–2016 Funded Research Grants Total Awarded: $1,528,500
Investigator Institution Research Project
HOWARD CHANG, MD, PHD
Professor of Dermatology
Early Career Scientist, HHMI
Howard Hughes Medical Institute and
Program in Epithelial Biology,
Stanford University School of Medicine
Gene Regulatory Mechanisms in Scleroderma
Epigenetics of Sex Differences in Scleroderma
LORINDA CHUNG, MD, MS
Associate Professor of Medicine,
Division of Immunology and Rheumatology
PAUL WOLTERS, MD
Pulmonary and Critical Care Medicine
Stanford University School of Medicine
Northern California Scleroderma Research Consortium
DAVID FIORENTINO, MD, PHD
Associate Professor of Dermatology,
Stanford University School of Medicine Stanford Scleroderma Center of Excellence
HAL DIETZ, MD
Victor A. McKusick Professor of Genetics and Medicine
Investigator, HHMI
Johns Hopkins University School of Medicine;
Howard Hughes Medical Institute
Interrogation of the Pathogenesis of Stiff Skin Syndrome:
A Congenital Form of Scleroderma
MONIQUE E. HINCHCLIFF, MD
Assistant Professor of Medicine
Northwestern University Feinberg School of Medicine
DNA Microarray and Traditional Scleroderma Biomarkers:
Does Microarray Provide Additional Prognostic Information?
ANTONY ROSEN, MD
Vice Dean for Research
Mary Betty Stevens Professor of Medicine
Johns Hopkins University School of Medicine
Autoantigen Discovery in Scleroderma Subsets:
Possible Targeting of the Neural Crest in Patients with Depigmentation
ANTONY ROSEN, MD
Vice Dean for Research
Mary Betty Stevens Professor of Medicine
STEPHEN J. ELLEDGE, PHD
The Gregor Mendel Professor of Genetics
Investigator, HHMI
Harvard Medical School, Department of Genetics
Defining Novel Autoantibodies and Associated
Cancer Mutations in Scleroderma
MICHAEL ROSENBLUM, MD, PHD
Assistant Professor of Medicine
University of California, San Francisco Dissecting the Role of Regulatory T cells in Regulating Tissue Fibrosis
ANDREW TAGER, MD
Associate Professor of Medicine
Massachusetts General Hospital and Harvard Medical School
Biomechanical and Biochemical Drivers of Scleroderma Fibrogenesis:
Targeting Myofibroblast Resistance to Apoptosis to Reverse Established Fibrosis
MICHAEL WHITFIELD, PHD
Associate Professor of Genetics
Dartmouth Medical School A Gene Expression Map of Scleroderma
FREDRICK WIGLEY, MD
Professor of Medicine
Associate Director of the Division of Rheumatology
Director of the Johns Hopkins Scleroderma Center
FRANCESCO BOIN, MD
Associate Professor of Medicine
In collaboration with:
Scientific Director
National Human Genome Research Institute
Genome Research in African American Scleroderma Patients (GRASP)
FREDRICK WIGLEY, MD
Professor of Medicine
Associate Director of the Division of Rheumatology
Director of the Johns Hopkins Scleroderma Center
Johns Hopkins University School of Medicine The Johns Hopkins Scleroderma Center of Excellence

Lorinda Chung
“I have a personal reason for my dedication and commitment to scleroderma
research–my oldest sister has been living with mixed connective tissue disease
since her early 20s. During my medical training, she developed features primarily
related to scleroderma, with painful digital ulcers and pulmonary hypertension. My
sister continues to be my drive to discover better treatments and ultimately a cure
for scleroderma.”
Hal Dietz
“My incentive to do research relates to an intense connection with my patients and
a desire to improve their length and quality of life. I have dozens of stories–each
connected with a specific face and a specific name. The privilege of hearing these
personal stories comes with an obligation–to try my best to make a difference.”
RESEARCH PROGRESS
9
SRF GRANT FUNDED RESEARCHERS
Why They Are Committed to Researching Scleroderma
Monique E. Hinchcliff
“I treated a patient with scleroderma in the early 2000s who could not graduate
from the intensive care unit. We grew up in the same town and attended the same
grade school and high school. She had severe pulmonary arterial hypertension that
was not responding to oral therapies, which necessitated continuous IV infusions.
I remember thinking what a terrible disease systemic sclerosis was and that better
treatments were needed. In my rheumatology fellowship, I sought out a laboratory
dedicated to SSc research. I have been in the field ever since.”
Antony Rosen
“My commitment to scleroderma began with a patient experience. During my
fellowship training in rheumatology, I saw a 26-year-old man. He was born into
a loving family, he grew up an all-star athlete, mastered all of the water sports
you could imagine, and was studying to be an engineer. The world was at his
fingertips, until he started exhibiting some unusual symptoms that progressed
in a very short time interval. His family flew him to Baltimore, where he would
be diagnosed with severe diffuse scleroderma with renal crisis and severe bowel
disease. Over the following year, I got to know the patient and his family very
well. I witnessed his slow decline and loss of independence over the course of a
year, despite aggressive immunosuppressive treatments. He ultimately died from
various complications just two years after his initial diagnosis. This experience was
emotionally challenging and intellectually frustrating. It served, however, as a
motivating force for me to commit to a career in scleroderma research with the aim
of gaining a better understanding of the disease. I ultimately hope that my efforts
will contribute to improvement in scleroderma diagnosis and management.”
Paul Wolters
“One of the first patients I cared for with lung fibrosis had scleroderma. The
disease was very aggressive, and he progressed from being a healthy middle-
aged man to succumbing to the disease within months. At the time, there was
little understanding of the cause of lung fibrosis, and no known therapies for
scleroderma-mediated lung fibrosis. It was in caring for this patient that I decided
to dedicate my research program to understanding and developing therapies for
lung fibrosis.”
Fredrick Wigley
“During my fellowship training in rheumatology at Johns Hopkins, I wondered if
Raynaud’s phenomenon could happen in the blood vessels of other organs, like
in the lung. I knew that pulmonary hypertension was a major complication of
scleroderma–a clinical problem that is thought to occur because of disease in the
lung blood vessels, causing them to constrict and thus increasing the pressure in
the circulation between the heart and lung. I met Dr. Robert Wise, a pulmonary
lung expert, and together we investigated this problem by measuring lung vessel
responses to cold exposure in patients with scleroderma. We found that while we
could not induce a reaction to cold exposure, the blood vessel expressed abnormal
reactions compared to controls. This project launched my interest in scleroderma.
Dr. Wise and I have worked together ever since, starting the Johns Hopkins
Scleroderma Center and publishing many research papers about scleroderma lung
disease. As the Center grew, I have worked with many incredible clinicians and
researchers on various aspects of the disease process and treatments.“
Michael Rosenblum
“As a dermatologist, I treat patients with scleroderma and understand how
devastating this disease can be. As an immunologist, I am fascinated with how
the immune system functions. Because scleroderma is a disease that is caused (at
least in part) by immune responses attacking the skin, I am especially interested
in trying to understand what causes this disease and how we can develop better
strategies to treat it. Every year, we understand this disease a little better and inch
closer to finding novel ways to treat it.”

FUNDED PROJECTS
10
STANFORD UNIVERSITY
SCHOOL OF MEDICINE
NEW TOOLS
Stanford Researcher Unlocking
the Language of the Immune System
For SRF-investigator Howard Chang, MD PhD, of Stanford University School of Medicine, one
of his most formative experiences was learning to debate.
An accomplished dermatologist and Director of the Stanford Center for Personal Dynamic
Regulomes, Dr. Chang immigrated to the United States with his family when he was 12 years
old. From a young age, he was encouraged by his parents to improve his language skills by
pursuing debate, and the methodical, thoughtful and analytical process underpinning debate
held fast in his mind. “For every topic, you would explore both sides of the facts, it was quite
different from other forms of study, and a very different process from other types of learning,”
recalls Dr. Chang. “Later I realized that this is what science felt like as well—going back and
forth to see which set of facts and data have merit—getting evidence and weighing that versus
what is known.”
Dr. Chang was supported by many gifted mentors throughout his years at Harvard, MIT and
Stanford. However, it was the bold work of his mentors at Stanford, Drs. Pat Brown and David
Botstein (now Chief Scientific Officer of Calico and a SRF Scientific Advisor), that really
motivated and challenged Dr. Chang to “think big” in his approach toward seemingly impossible
disease-relevant problems, as they had when they sought to map the human genome. It was this
kind of foundation that taught Dr. Chang to question how well our current knowledge allows us
to understand complex biological problems and what information and new technology might be
needed to make progress.
Dr. Chang and his team have pursued a “think big” approach to defining the complexities
of how genes are regulated—a fundamental biological question and one that is essential to
understanding human health. In this effort, they are developing new tools and techniques to
study the regulome, the intricate set of DNA elements, RNA, transcription factors, and larger
proteins that dictate the expression of genes.
“If DNA is the hardware for our cells that we inherit from our parents,” explains Dr. Chang,
“the regulome is the software programming governing and reflecting the cells' activity, essentially
telling our cells—be it muscle, liver or skin—how to react and which program to run. As with a
computer, it is easy to see and examine the hardware, but not always simple to understand which
bits of code are responsible for what function; what the software is doing that leads cells to a
disease process. Cells have a series of genes that switch on or off, regulating activity: some of the
switches are always on, some always off and sitting unused for years at a time, while others are
turned on and off with high frequency. Deciphering the state of switches doesn’t lead to a perfect
understanding of all the cell functions, but it is significant progress in that direction.”
This quest to better understand the regulome led Dr. Chang, Dr. William Greenleaf and their
teams at Stanford to develop a new technique called ATAC-seq, for studying the complex
system of gene regulation. Different cells use different genes and therefore different parts of
DNA; similarly, environmental stimuli cause different genes to be activated or turned off within
a cell. Because the DNA in one cell would be two meters long if fully stretched out, inside a
cell it exists in a compacted form and only those genes that are in a non-compacted or “open”
conformation are accessible to be activated by other components of the regulome. ATAC-seq
gives researchers information about which genes are in an “open” conformation, and it reveals
other information about what other regulome components are involved in the genes’ regulation.
Dr. Chang and his team are using the technique to better understand the immune system and
scleroderma.
The research and the technique are quite promising, and with ATAC-seq, Dr. Chang already
has some interesting findings. Among them were distinct differences in gene expression in the
immune system of men and women. In a study evaluating healthy subjects, Dr. Chang and his
team took blood samples from 12 volunteers to measure how genes switched off and on, and
“It’s far easier to research a system
when we use cells grown in culture
or animal models because we can
control all the variables and do a very
beautiful experiment that way. When
you look into a problem in human
health, you are forced to confront
disease process and many elements
that you can’t control in human
studies. That aspiration, that goal,
solving disease-relevant problems—
that is inspiring to me.”

11
how the activity varied from individual to individual. Dr. Chang’s team also looked at how much
change occurred at different times in the same volunteers, looking exclusively at T cells, a critical
cell of the immune system.
The study found that a small number, 7% of the genes, were switched on in different patterns
from person to person. When the team measured gene activity levels from 30 of the top 500
gender-influenced genes, researchers found that women and men use different switches to
activate and deactivate many immune system genes.These genes may have particular value in
understanding scleroderma, where four out of five patients are women.
“Since autoimmune diseases have a female-male bias, we’ve long believed that there was
something going on in the immune system, and we now have a clue that there are differences in
the immune system, and that gives us an entrée into the problem,” says Dr. Chang.
With a better understanding of scleroderma, Dr. Chang and others may identify a therapeutic
vulnerability, providing opportunity for a tailor-made approach aimed at the one or two types of
“bad-acting” cells.
As a heterogeneous disease involving multiple types of cells, understanding the normal state
for cells is important, and observing changes over time with a disease like scleroderma would
provide clinicians with tremendous insight into how and why changes occurred.To accelerate
the analysis of scleroderma genes, Dr. Chang’s team is searching for sets of monozygotic twins—
one with and one without scleroderma.The twin analysis would make it possible for Dr. Chang
and his team to compare people with identical DNA whose cells have different switches turned
on and off or, to use Dr. Chang’s analogy, the twin analysis allows researchers to compare people
who have identical hardware, but whose cells may be running different software, leading to
disease in one twin while the other remains healthy.This type of analysis vastly simplifies their
search, and the hope is that it will quickly identify the disease-specific differences.
One of the benefits of the ATAC-seq technique is that it lets researchers sample living cells in
real time, using extremely small samples of blood or tissue. Prior to ATAC-seq, researchers had
to take large samples from patients, or use cell culture to grow enough material to analyze, vastly
increasing the potential for error.The ATAC-seq process is a million-fold more sensitive and
a hundred times faster than previous methods.This improved sensitivity and efficiency means
that the technique can be used to study rare cell types and that it someday may be amenable to
clinical use.
Optimism surrounding ATAC-seq and Dr. Chang’s SRF-funded research projects stems from
some tantalizing potential outcomes: understanding and effectively predicting the progress
and impact of disease, and using the switches and their processes as a potential diagnostic or
therapeutic target.
Dr. Chang has made progress in identifying cell switches and “bad-acting” cells in other diseases,
including asthma and leukemia. And, in the coming years, we anticipate additional insights from
this groundbreaking technique. ATAC-seq is not only a robust research tool, but also has broad
clinical and drug development application so Dr. Chang has co-founded Epinomics, a company
devoted to making ATAC-seq available to the widest range of researchers and companies to
improve clinical development, clinical trials, and to ultimately benefit the greatest number of
patients.
Following his mentors, who paved the way for his research, Dr. Chang is tackling perhaps
among the most difficult, complex and challenging diseases of all in scleroderma.
“It’s far easier to research a system when we use cells grown in culture or animal models because
we can control all the variables and do a very beautiful experiment that way,” says Dr. Chang.
“But when you look into a problem in human health, you are forced to confront disease process
and many elements you can’t control in human studies.That aspiration, that goal, solving
disease-relevant problems—that is inspiring to me.”
And like his early mentors, “the SRF acts boldly,” says Dr. Chang. “They find the best scientists
with fresh perspectives and provide an environment where interesting ideas can get off the
ground…The SRF has the flexibility to immediately pursue the ideas that are at the forefront of
science. As a result, the community is in a much stronger place and progress is happening in an
accelerated fashion.”
“The SRF acts boldly. It finds the
best scientists with fresh perspectives
and provides an environment to
immediately pursue the ideas that
are at the forefront of science. As
a result, the community is in a
much stronger place and progress
is happening at an accelerated
fashion.”

FUNDED PROJECTS
12
STANFORD UNIVERSITY SCHOOL OF MEDICINE
Gene Regulatory Mechanisms in Scleroderma
Project Summary
Systemic scleroderma (SSc) is a disease characterized by excess fibrosis (hardening) in skin and
other organs, and the immune system is somehow involved in making the fibrosis happen. Dr.
Chang’s research is focused on how the genes involved in scleroderma are turned on or off. In
scleroderma, some immune cells react against the body, making the skin thicken. Therefore, it is
crucial to understand this process. Dr. Chang’s lab is investigating, at the most basic level, how
the DNA might be different, and why some of those genes that control the immune system and
the cells in the skin are turned on for the wrong reason.The gene control switches are like the
command lines that run the cell’s software, and his lab is working out how gene control is altered
in scleroderma in order to detect and treat the disease at the most fundamental level.
Research Update
Dr. Chang and his team are most excited about recent progress in learning how genes are turned
on or off in patient cells.This pivotal information previously required the analysis of millions of
cells; this bulk approach precluded the use of actual patient tissue and could only be applied to
cells artificially grown in the lab over weeks (a process that likely alters the cells being studied).
Dr. Chang’s lab invented a new technology, ATAC-seq, which is one million-fold more sensitive
and 100 times faster. Using this new tool, it is possible to visualize, for the first time, the gene
switches that are altered in scleroderma, even in single cells.
Dr. Chang’s efforts will focus on the continued development of ultrasensitive and rapid
genomic technologies that are directly applicable to SSc patient samples, and can provide
actionable information for SSc pathogenesis and outcomes suitable for clinical trials or disease
management. Ultimately, the result of Dr. Chang’s work will mean that scleroderma patients can
be much better matched to the right treatments or clinical trials to treat their disease.The new
generation of drugs can target very precise events in cells, but may only work if those events are
taking place. His goal is to make it possible to see those events in patients instead of guessing
based on symptoms.
Epigenetics of Sex Differences in Scleroderma
Project Summary
The majority of patients with scleroderma are women, with an incidence four times that of men.
Scleroderma in men, although rarer, is often a more rapidly progressing form of the disease.
Despite compelling epidemiological evidence of sex-related differences in the pathogenesis,
there is very little consensus as to what is happening at the molecular level. Dr. Chang and his
team are investigating “X chromosome dosage,” a female-specific epigenetic mechanism.This
epigenetic mechanism, the body’s inefficient or incomplete silencing of the activity of one of the
two X chromosomes in the female DNA (known as X-chromosome inactivation escape), has
been theorized to have involvement in scleroderma.This project aims to build upon Dr. Chang’s
finding of strong variance in sex differences in T cell gene regulatory landscape, including in
scleroderma lesion T cells.
Research Update
Using a technique developed at Stanford University for studying epigenomics, Dr. Chang
has demonstrated marked sex differences in genes regulating the immune system. (See Dr.
Chang feature, page 10). Dr. Chang’s team will dissect how sex chromosomal differences lead
to sex-specific switches in scleroderma.The team will continue to investigate the connection
between X-chromosome inactivation escape and its connection to scleroderma and autoimmune
disorders.
DR. CHANG ON THE SRF AND
COLLABORATION
Scleroderma is a complex and uncommon
disease, so it is especially important that we
collaborate as teams with investigators across
the country. The SRF plays a major role in
organizing the entire community, supporting
large-scale programs and genetic studies. The
SRF has really catalyzed how all of these
investigators can work together in the U.S.
and across the world. With the SRF, there is a
sense of collaboration and community. All of the
investigators learn from and help each other to
make the research go faster and bring solutions
more quickly to patients.
DR. CHANG ON THE REWARDS OF
RESEARCH
The research we are doing is very rewarding–
we can show a direct connection and potentially
help patients. A few years ago, our team
discovered a class of drugs that was not
previously used to treat scleroderma. Because
of our molecular studies, these were nominated
and used in this disease. In some patients, it
had a dramatic effect. This is one of those cases
where we were really happy that our research
provided some useful information.
DR. CHANG ON THE FUTURE OF
SCLERODERMA RESEARCH
I’m really optimistic about the prospects for
scleroderma, because in the last five to 10
years there’s really been an increasing pace of
understanding about the disease, its subtypes,
and also some potential causes. I’m hopeful
that maybe in a five-year time frame, many
of these ideas will start moving into actual
therapies.

PAUL WOLTERS, MD
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
Northern California Scleroderma Research Consortium
Project Summary
The Northern California Research Consortium is a collaboration between investigators at the
University of California, San Francisco (UCSF) and Stanford University aimed at accelerating
basic, clinical, and translational research.The consortium is working on clinical characteristics
and molecular mediators of patients with scleroderma. A core feature of this collaboration has
been the development of a multicenter longitudinal registry of detailed scleroderma patient
clinical information linked to biological samples. By combining the clinical and research assets
of the two scleroderma centers, the database is strengthened by increasing its size and diversity,
making it large enough to capture various subsets of scleroderma patients.The database of
information and sample repository will be used to test and answer critical clinical and molecular
questions relevant to scleroderma patients.
Research Update
In the past year, the consortium put the database of patient samples to use with a focus on
interstitial lung disease.The lung disease is an important area of focus, as it is one of the leading
causes of morbidity and mortality in scleroderma. Utilizing the database, scientists developed
a model to predict the disease progression for patients with scleroderma-associated interstitial
lung disease.
In the past, prediction of risk and potential patient progress has been difficult, due for the most
part to the heterogeneity of the disease. Researchers created a simple system to predict disease
course and, using readily accessible clinical variables, developed a predictive model of mortality.
As a next step, the consortium may develop and associate molecular markers that could further
increase accuracy of predictive models.
DR. WOLTERS ON THE SRF AND
COLLABORATION
The SRF is the most important philanthropic
organization dedicated to developing novel
treatments for patients with scleroderma. The
SRF's Annual Scientific Workshop is a major
event where I am updated on advances in
scleroderma before they are published. It
provides many opportunities for scientists
to discuss research and establish productive
collaborations. Translational research requires
collaboration between basic scientists, clinical
scientists, and patients. The SRF recognizes the
importance of these interactions, engages key
stakeholders, and unites them in productive
collaborations that advance the understanding
of scleroderma.
DR. CHUNG ON THE SRF AND
COLLABORATION
The SRF has been instrumental in connecting
our group with other top scleroderma
researchers in the country. The SRF facilitated
communication between researchers and
introduced Stanford to investigators and industry
sponsors with similar interests but different
research skill sets in order to build the strongest
research teams possible. Specifically, the SRF
supported the development and growth of
our collaborative research group with UCSF,
the Northern California Scleroderma Research
Consortium. Multiple promising studies have
arisen from our collaboration with UCSF, and the
group has grown to triple its initial size over the
past few years.
13

DAVID FIORENTINO, MD, PHD
Stanford University Scleroderma Center of Excellence
Project Summary
The primary goal of the Stanford University Scleroderma Center is to provide outstanding
multispecialty care for patients with scleroderma, with experts from rheumatology, dermatology,
pulmonary, gastroenterology, cardiology, immunology, and hand/vascular specialists working
together to take care of each patient as a whole. At the Stanford Scleroderma Clinic held at
the Stanford Redwood City Outpatient Center, every scleroderma patient is seen by a team of
physicians from each of these specialty areas at the same time.The Center provides access to
novel therapies through clinical trials and conducts groundbreaking clinical and translational
research in order to unravel the pathogenesis of this disease, discover new biomarkers, and test
new therapies for scleroderma and related diseases.
As part of the Center’s commitment to the future of scleroderma research, clinicians at the
Stanford Center train the next generation of clinicians and scientists such as research fellow
Antonia Valenzuela Vergara, who is focusing her research on calcinosis studies.
Research Update
All types of research are important to finding a cure for scleroderma–basic science studies,
translational research, and clinical studies, including those looking at large databases, as well as
clinical trials. Calcinosis is a major problem for at least a quarter of scleroderma patients, and
thus far, there are no approved treatments.This past year, the Stanford Center led a multicenter
international study to identify clinical associations with calcinosis in scleroderma patients. Its
team has found a strong association between calcinosis and digital ulcers and has identified a
new association with osteoporosis.These clinical associations provide patients with new potential
treatments for calcinosis.
The Stanford Center has grown substantially over the past several years, with over 650
scleroderma patients evaluated and treated at our Center. Stanford Center clinicians are
also actively carrying out state-of-the-art research using tissue samples from patients with
scleroderma and working with basic scientists to better understand what causes scleroderma,
and to find markers in skin or blood that determine which patients will respond best to which
therapies.
If researchers are successful in identifying accurate markers of disease and new treatment targets
that can be tested in clinical trials, multiple therapies available to treat the disease could be
rapidly developed, as they have for rheumatoid arthritis patients. Additionally, a major goal of
the Center is to individualize treatment, thus identifying which therapy or therapies are best
for each patient.This individualized medicine is so important to the treatment of patients with
scleroderma since, despite the ability to group some patients together, every patient is unique.
DR. CHUNG ON THE FUTURE OF
My optimism has grown dramatically over the
past few years. Recently, new accurate markers
of lung and skin disease have been identified
in the blood so we can easily track how sick
patients are, or will be, from a simple blood
test. In addition, stem cell transplantation is
now considered a viable treatment option for
patients with very severe skin disease. Finally,
more new drugs are currently being tested for
the treatment of scleroderma than ever before,
many of which appear effective in initial studies.
DR. FIORENTINO ON THE FUTURE OF
There’s finally a critical momentum, a critical
mass of researchers that is becoming involved
in trying to understand and cure this disease.
As a result, we now have large international
registries of patients that are key to studying
scleroderma. This, along with the development
of new tools we can apply that are allowing us
to be able to look at human beings in a much
deeper fashion molecularly, at a cost that is no
longer prohibitive, bodes well for the future of
scleroderma research.
DR. FIORENTINO ON THE SRF AND
COLLABORATION
The SRF is the most unique disease-specific
foundation. Ideas can get stale, but the SRF
has a breakthrough mentality and supports
outside-the-box research. The SRF gathers
world-class minds and strong scientists across a
range of disciplines and brings them together to
collaborate and apply their expertise to tackle
this very difficult problem.
FUNDED PROJECTS
14

HAL DIETZ, MD
JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE
Interrogation of the Pathogenesis of Stiff Skin Syndrome: A Congenital Form of Scleroderma
Project Summary
Dr. Hal Dietz’s laboratory focuses on understanding the process of excessive collagen production
(fibrosis) through the comprehensive study of a rare genetic form of scleroderma called stiff skin
syndrome (SSS). It is the hope and expectation that this work will inform both the cause and
treatment of more common forms of scleroderma such as systemic sclerosis (SSc).The Dietz lab
learned that patients with SSS have a change (mutation) in the gene that encodes the connective
tissue protein fibrillin-1 and showed that the mutations prevent proper interaction between cells
of the body and neighboring connective tissue.
Using genetically engineered mouse models of stiff skin syndrome, the Dietz lab showed that
SSS is associated with all the abnormalities seen in SSc, including a predisposition for skin
and organ fibrosis, autoimmunity, and autoinflammation. Most importantly, manipulation
of the proteins that normally make connections between cells and connective tissue (called
integrins) was able to prevent all abnormalities seen in SSS mice, including fibrosis, and selected
manipulations could actually reverse established fibrosis.These data suggest new and entirely
novel treatment strategies that hold promise for people with various forms of scleroderma.
The Dietz lab is also studying events that are required for the body to generate cells capable of
producing excessive collagen called myofibroblasts. Hopefully, drugs that block such events may
be able to prevent fibrotic diseases such as scleroderma.
Research Update
All of the current work in the Dietz lab implicated a specific cell type in the various problems
seen in scleroderma.This cell type (the plasmacytoid dendritic cell or pDC) is normally involved
in the body’s ability to mount a response to viruses and other environmental insults, but is
inappropriately activated in the lab's mouse models of scleroderma.The lab can already show
that simple depletion of pDCs can prevent or reverse existing fibrosis in scleroderma mice.The
Dietz team’s current work is looking at specific chemicals that are made by pDCs.The team is
using both drugs and genetic techniques to block these chemicals to try to find the Achilles heel
of fibrotic diseases. Dietz and his team have also found that drugs that block a specific class of
enzymes called calpains can prevent myofibroblast formation and fibrosis in mice.
Success would mean that clinicians would not only be able to prevent progression of
scleroderma, but would also be able to reverse established manifestations of the condition.
Researchers might also be able to identify the triggers for disease and, in that manner, prevent
its onset. Success would mean hope for a cure. Dr. Dietz’s incentive to do research relates to an
intense connection with his patients and to a desire to improve their length and quality of life.
DR. DIETZ ON THE FUTURE OF
There has been more progress in the last
five years than in the prior 50 years. While
we do not yet know “the” global cause of
scleroderma, we now know a cause (for people
with stiff skin syndrome), and we believe the
insights we are gathering will be applicable to
systemic sclerosis. We have the first animal
model for scleroderma that is a direct correlate
of a human form of the condition. We (and
other groups) now have treatment strategies
that have been able to prevent and even reverse
fibrosis in mouse models. Big pharmaceutical
companies are getting involved.
DR. DIETZ ON DEVELOPING THE NEXT
GENERATION OF SCLERODERMA
RESEARCHERS
Some of the best and brightest young people
that I have ever been associated with have been
swept up in the excitement about scleroderma
research. We email late into the night about
exciting results, new insights, and risky ideas
with the potential for a big payoff. We have
been able to forge exciting collaborations with
other groups–bringing together complementary
ideas and expertise. Based on their enthusiasm,
I bet that many of these young people will
be lifelong partners in the fight against
scleroderma.
15

FUNDED PROJECTS
MONIQUE E. HINCHCLIFF, MD
NORTHWESTERN UNIVERSITY FEINBERG SCHOOL OF MEDICINE
DNA Microarray and Traditional Scleroderma Biomarkers: Does Microarray Provide Additional
Prognostic Information?
Project Summary
Dr. Hinchcliff’s research focuses on identifying subsets of patients with systemic scleroderma
(SSc) so that all patients in the group are similar to one another, and identifying new, targeted
treatments for the different groups of patients. Her lab has demonstrated that specific and
different deregulated molecular pathways are associated with these patient groups.The
differences in disease and pathways underscore the fact that a “one size fits all” treatment
approach traditionally used in clinical trials will never work. Classifying similar patients into
distinct subsets will enable researchers to conduct valid clinical trials.
To identify and organize groups of SSc patients for treatment, Dr. Hinchcliff has turned to
assessing skin gene expression because skin is readily accessible and is the most commonly
affected organ. In close collaboration with genomics colleagues, Dr. Hinchcliff and her team
have identified relevant SSc patient groups and the deregulated molecular pathways that
underlie the specific groups. Next, researchers are working to identify specific drugs that have
been approved for other indications and can then be “repurposed” for the right scleroderma
patient.
Research Update
In a first-of-its-kind study, Dr. Hinchcliff and her team performed DNA microarray
genetic analysis on esophageal biopsies collected during clinically indicated
esophagogastroduodenoscopy exams. The team at Northwestern discovered that the
inflammatory and proliferation gene expression signatures present in SSc skin are also found
in the SSc esophagus. Moreover, detailed esophageal tissue examination revealed that the
inflammatory signature was independent of inflammation caused by gastric reflux (a common
problem in SSc patients with esophageal dilatation).These important findings suggest there may
be a role for immune suppression in the treatment of SSc esophageal disease to normalize the
inflammatory gene expression signature. Up to this point, patients suffering from SSc esophageal
dysmotility are usually only prescribed acid-blocking medications that do nothing to address
the underlying problem of esophageal dysmotility.The SSc esophagus is notoriously difficult to
study because there are no animal models of disease, and esophageal smooth muscle cells cannot
be grown in culture conditions.
If Dr. Hinchcliff's research is successful, she and her team will be able to more effectively
identify the right FDA-approved drug for the right SSc patient: ideally, a safe and well-tolerated
drug targeting the deregulated molecular pathways in a patient’s skin and esophageal tissues.
Patients with SSc will see their doctor and undergo routine skin and esophageal biopsies to
permit analysis of gene expression, and this information will be used to identify appropriate
targeted treatments.The trial-and-error guesswork that clinicians use regarding picking the right
treatment would be a thing of the past.
DR. HINCHCLIFF ON THE FUTURE OF
The methods to conduct sound, unbiased
biomedical research are remarkable and
changing every month. The use of new “omic”
technologies, coupled with team science where
basic and clinician scientists work hand-in-hand,
have led to meaningful breakthroughs that will
one day directly influence patient care.
DR. HINCHCLIFF AND THE ‘AHA’
MOMENT
Preparing for a grant submission, I reviewed all
the literature for the scleroderma esophagus
since the 19th century. I found that the loss
of esophageal smooth muscle is the major
pathology underlying systemic scleroderma
(SSc) esophageal disease, in contrast to what
many doctors are taught in medical school. I
was told that fibrosis was the major driver of
disease, but that is likely a secondary event.
Thus, if we want to treat patients with SSc
esophageal disease, we probably should
be working to understand the mechanisms
that lead to smooth muscle loss. Our work
examining esophageal biopsies for gene
expression and histology and their relation
to esophageal function has the potential to
generate new information that may lead to
a better understanding of the precise disease
mechanism.
16

17
ANTONY ROSEN, MD
Autoantigen Discovery in Scleroderma Subsets: Possible Targeting of the Neural Crest in Patients
with Depigmentation
Project Summary
Scleroderma is a disabling condition characterized by systemic inflammation, scarring of the
skin, internal organ failure, and an immune response to a variety of cellular proteins. Patients
with scleroderma have several unique clinical features that are not found in patients with
other rheumatic autoimmune diseases. Dr. Rosen and his group are working to evaluate and
understand what the immune system is seeing in scleroderma patients, in particular molecules
seen in specific target tissues, which may be responsible for the specific tissue damage in this
disease.
Dr. Rosen and his team are examining several novel types of damage exhibited in scleroderma,
including facial disfigurement, skin thickening, areas of skin pigment loss, and severe problems
with gastrointestinal (GI) tract motility. Interestingly, a common thread links these tissues (e.g.,
facial cartilage, skin pigment): The cells that make up these tissues all develop from a specific
subset of stem cells called neural crest (NC) cells. It is possible that the immune system is
specifically injuring neural crest-derived cells/tissues in some scleroderma patients.
Research Update
Dr. Rosen and his research team are focusing on novel scleroderma autoantigen discovery
using NC cells at varying stages of differentiation (induced neural crest, early neural crest,
late neural crest, mesenchymal, autonomic, peripheral neuronal, Schwann) for the antibody
screens. This project is being done in collaboration with Dr. Gabsang Lee (Johns Hopkins
Institute for Cell Engineering), who has refined this technique and is providing the neural
crest cells to the Rosen group. Using samples from well-characterized scleroderma patients,
the team is screening these cell samples and their components by immunoblotting. From this
primary screen, they have identified two sera that appear to detect new specificities in distinct
components, and is in the process of studies to identify them.
The study aims to define novel autoantigens in NC cells using sera from SSc patients
with distinct GI phenotypes. New autoantibody specificities in NC cells may provide: 1)
biomarkers for diagnosis, monitoring, and risk stratification, and 2) mechanistic insights into
the pathogenesis of important SSc subsets. The novel concept of an autoimmune response
targeting stem cells in adult tissues will likely be applicable to other rheumatic autoimmune
diseases. Such insights may inform the development of more effective diagnostic strategies
and therapies in the future.
DR. ROSEN AND THE ‘AHA’ MOMENT
I have experienced an “aha” moment
in scleroderma research that occurred at
the inception of this project. During my
scleroderma-focused clinic, I observed that:
(a) patients with scleroderma have different
patterns of gastrointestinal dysmotility, and
(b) there appeared to be a potential link
clinically between hypopigmentation and
severe gastrointestinal disease in scleroderma.
As the muscular anatomy throughout the
gastrointestinal tract is consistent, it was striking
that the type of nerves stimulating motion in
different portions of the gastrointestinal tract
was variable. We therefore postulated that
dysfunction of different branches of the nervous
system may explain the variable gastrointestinal
dysmotility patterns observed in patients.
DR. ROSEN ON DEVELOPING THE
NEXT GENERATION OF SCLERODERMA
RESEARCHERS
The next generation of scleroderma investigators
is being nurtured in our lab. Funding from both
the SRF and NIH has allowed us to support
young scleroderma faculty in translational
research projects and cultivate important
collaborations between clinical and basic
investigators. We believe that translational
research at the intersection of clinical and
basic science is one of the most effective ways
to answer important questions about human
disease. We currently have three young clinical
investigators who interact regularly with our
lab on such translational projects. Their areas
of interest broadly include: a) scleroderma and
cancer, b) scleroderma and gastrointestinal
disease/neural crest cells, and c) scleroderma-
associated myopathy. The ongoing projects
focus on insights into disease mechanism, using
material from patients (e.g., serum, tissue). The
results from these studies will have significant
clinical implications that we anticipate will
revolutionize our understanding of this disease.

DR. ROSEN ON THE FUTURE OF
My optimism for finding a treatment or cure for
scleroderma is greater now than it was three
or five years ago. Our understanding of the
disease mechanisms is growing substantially,
as we are able to answer important questions
with increasingly sophisticated methods. For
example, next-generation sequencing and other
technologies are allowing discoveries with
precision never previously feasible.
18
FUNDED PROJECTS
ANTONY ROSEN, MD
STEPHEN J. ELLEDGE, PHD
HARVARD MEDICAL SCHOOL, DEPARTMENT OF GENETICS
Defining Novel Antibodies and Associated Cancer Mutations in Scleroderma
Project Summary
Drs. Rosen and his group are expanding upon their research identifying cancer as an initiator
of scleroderma, which may be responsible for the specific tissue damage seen in this disease.
They are partnering with Dr. Stephen Elledge to search for novel antigens in patients where
cancer presents around the time of the scleroderma diagnosis.
There has been an increasing appreciation that scleroderma and cancer diagnoses cluster
temporally in a group of patients who have antibodies to the large subunit of RNA polymerase
3 (protein called RPC1, a gene called POLR3A).The occurrence of two diseases close together
in time has suggested that they might be related mechanistically–either that the cancer causes
scleroderma, or that scleroderma allows cancer to emerge in some patients.
In order to understand the relationship in more detail, Drs. Rosen and Elledge are pursuing
a series of studies on patients with both scleroderma and cancer, and asking whether the
specific molecules targeted in scleroderma patients were mutated in those patients’ cancers
and were recognized by the patients’ immune response. Although the mechanisms underlying
scleroderma remain incompletely defined, the striking association of specific immune responses
with scleroderma and its distinct clinical phenotypes strongly suggests that understanding the
selection of immune targets in scleroderma may identify underlying mechanisms that initiate
and drive the disease.
Research Update
The research of Dr. Rosen’s team has shown previously that scleroderma patients with cancer
and RNAPOL3 antibodies have a short interval between cancer diagnosis and scleroderma
onset and have a greater than five-fold increased risk of cancer within two years of scleroderma
diagnosis.
In their SRF-funded studies, the researchers are focusing on another group of scleroderma
patients with a close temporal relationship to cancer–the “antibody negative” group. In
collaboration with Steve Elledge (Harvard), we are using a highly novel approach (PhipSeq)
to identify antibodies in this group.The teams have observed a new specificity in some of these
patients and are currently optimizing screening assays.The Rosen group has also obtained
cancer tissue from several scleroderma patients with these novel antibodies, and they are
collaborating with Bert Vogelstein (Johns Hopkins) to determine whether the antigen is
mutated in these cancers, as was the case with RNAPOL3.
Additionally, this project has the potential to make a substantial contribution to the current
understanding, management, and treatment of scleroderma. First, a better understanding of the
disease process could inform the development of more targeted, less toxic medications to treat
scleroderma. It might also focus attention on finding early cancers in patients presenting with
scleroderma and removing them before the process becomes reversible.

19
MICHAEL ROSENBLUM, MD, PHD
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
Dissecting the Role of Regulatory T Cells in Regulating Tissue Fibrosis
Project Summary
Scleroderma is thought to result from an overactive immune system attacking normal tissues and
organs. We all have specific cells in our bodies whose major function is to control the immune
system, to make sure that it does not attack normal healthy tissues. Dr. Rosenblum’s lab has
found that a specific subset of these cells are absent and/or not functioning properly in patients
with scleroderma.These cells are called regulatory T cells (Tregs). Currently, Dr. Rosenblum and
his team are exploring the role that Tregs play in preventing hardening of the skin (fibrosis) and
have found that Tregs directly inhibit cells causing the fibrosis. In addition, they have created
mouse models of scleroderma that utilize human skin and blood from scleroderma patients in
order to better model the human disease in mice. Dr. Rosenblum’s research project is focused
on using these models to understand how Tregs prevent skin fibrosis in scleroderma.This
knowledge will be used to pioneer new therapies that increase the function of Tregs to prevent
tissue fibrosis in patients with scleroderma.
Research Update
Dr. Rosenblum’s lab demonstrated his thesis in an animal model that connected the increase
in Tregs to the prevention of fibrosis. Additionally, the lab demonstrated that Tregs greatly
influence macrophage (a white blood cell critical for immune response) differentiation.The
connection may also have a significant impact on the development of fibrosis.The team will
work to identify the molecular mechanisms of Treg mediation of the functioning of white blood
cells, or macrophages.
DR. ROSENBLUM ON THE SRF AND
COLLABORATION
The SRF has played an invaluable role in our
research, not only from a funding perspective,
but also from the perspective of bringing
world-class researchers from different scientific
disciplines together to try to solve this
problem. Brainstorming and networking with
this elite group of scientists has challenged
us to rethink how we are approaching this
disease. In addition, we have made invaluable
tangible collaborations that greatly helped
move our work forward faster and at a higher
level. These collaborations would never have
happened without the SRF. The SRF is a first-
class organization that is passionately driven
and exceptionally motivated to help patients
suffering from scleroderma.
DR. ROSENBLUM ON THE FUTURE OF
There has been a renewed focus at both a
national and international level to better treat
chronic fibrosing diseases, and because of this,
we are pushing forward at an accelerated pace.
My optimism is higher than it has ever been and
continues to grow.

20
FUNDED PROJECTS
DR. TAGER ON THE FUTURE OF
My optimism about the development of
effective new treatments for scleroderma is
greater than ever. A good part of this optimism
is the growing appreciation that diverse chemical
signals in the body may cause tissue scarring in
patients with scleroderma. Although the tissue
scarring of patients with scleroderma may look
very similar, the signals that drive this scarring
may be different between these patients. This
trend is being led by scleroderma researchers
funded by the SRF, who are analyzing the pro-
fibrotic signals that are present in skin biopsies
from many different patients with scleroderma,
and finding several distinct patterns of these
signals. This variability between patients
suggests that we will need to take a
“personalized medicine” approach to treating
scleroderma, in which different drugs may be
needed to successfully treat different patients. I
think appreciating this variability in scleroderma
will ultimately allow us to successfully treat
the scarring caused by this disease in as many
patients as possible and is an extremely exciting
development in scleroderma research, being led
by the SRF.
ANDREW TAGER, MD
MASSACHUSETTS GENERAL HOSPITAL
HARVARD MEDICAL SCHOOL
Biomechanical and Biochemical Drivers of Scleroderma Fibrogenesis: Targeting Myofibroblast
Resistance to Apoptosis to Reverse Established Fibrosis
Project Summary
Dr.Tager’s research is focused on developing new strategies to treat the fibrosis, or scarring, that
occurs in the skin, lungs, and other internal organs of patients with scleroderma.This scarring
is responsible for a great deal of the suffering and deaths caused by scleroderma, and currently
available drugs have not been successful in treating this aspect of the disease.To find new drugs
to treat fibrosis in scleroderma, Dr.Tager’s lab is investigating fibroblasts the cells in the body
that are responsible for producing scarring.These cells produce the abnormally high levels of
collagen in scarred tissues. Collagen fibers support the skin and other body tissues, giving them
strength. Loss of collagen in the skin causes it to become weak and wrinkled, but too much
collagen in the skin, as scleroderma patients have, causes the skin to thicken and harden, making
it difficult to bend fingers and other joints.Too much collagen in the lungs makes it difficult to
breathe and to get enough oxygen into the bloodstream.
A drug capable of halting or slowing the progression of scleroderma fibrosis would be a highly
valuable addition to treatment of the disease.The ultimate goal of scleroderma fibrosis drug
development is to provide therapies capable of reversing established fibrosis. Developing
such therapies requires precise understanding of how and why fibrosis is characteristically so
persistent. One of the central reasons behind the persistence of fibrosis is that fibroblasts in
scleroderma become resistant to the normal process of dying when they are not needed, much in
the way that cancer cells do.The goals of the studies for the Tager team’s SRF-funded research
are to better understand how fibroblasts become resistant to normal cell death processes in
scleroderma fibrosis, and then to develop treatment strategies to reverse established fibrosis
in scleroderma by overcoming this resistance of scleroderma fibroblasts to normal cell death
processes.
Research Update
One of the results of the development of scarring, or fibrosis, in scleroderma is that the affected
tissues become stiffer. Dr.Tager and his team have recently found, however, that this increased
stiffness of scarred tissues causes the scarring process to progress further.The lab found that
fibroblasts become resistant to the normal process of dying when they are not needed as a result
of the increased stiffness of scarred tissues.This increased stiffness causes fibroblasts to make
the same set of proteins that many cancer cells make when they become abnormally resistant
to dying, as well. Cancer researchers have developed a series of drugs that can overcome this
resistance to death in cancer cells. In very exciting recent results, Dr.Tager found that these same
drugs can overcome fibroblast resistance to death in scleroderma, and can reverse established
fibrosis in mouse models of this disease.The Tager group's next steps will be to determine
whether the team can use these drugs for the benefit of scleroderma patients. If the research
is successful, it would indicate that a certain class of drugs that has already been developed for
cancer will be able to reverse established fibrosis and relieve much of the suffering associated
with this devastating disease.

21
MICHAEL WHITFIELD, PHD
DARTMOUTH MEDICAL SCHOOL
A Gene Expression Map of Scleroderma
Project Summary
The Whitfield lab is working to understand the variability in scleroderma and determine what
is causing fibrosis in skin and organs at the molecular level.The team is analyzing how genes
expressed in a patient’s tissues change over the course of the disease. Among patients with the
same clinical diagnosis (e.g., diffuse systemic sclerosis), researchers observed distinct differences
among patients by their gene expression fingerprints, and are grouping patients into “molecular
subsets.”The lab’s data suggest that these groups may slowly change over time as the disease
progresses.
By analyzing all of the data on scleroderma genes and how they change, the lab has been able
to identify the genes that change most often and determine how these genes may interact and
connect with one another.This newly discovered “network” of genes appears to represent disease
processes and stages through which the disease progresses. For the first time, researchers can link
the genetic changes predisposing an individual’s susceptibility for developing scleroderma to the
molecular subset of each patient.
The data further suggest that the disease process likely begins in the immune system as a result
of some type of chronic immune stimulation that occurs in the context of genetic changes. It
is believed that this activity makes an individual more susceptible to the disease, leading to the
vascular, skin-hardening fibrosis and organ damage known collectively as systemic scleroderma
(SSc). Dr. Whitfield and his team are searching for and identifying possible disease triggers that
may generate the initial aberrant immune response, as well as characterizing how patients move
through the stages of their disease.They are diligently working on identifying drugs that target
each of the molecular subsets, in part by partnering with pharmaceutical and biotechnology
companies, as well as physicians at academic centers responsible for clinical trials in scleroderma.
A second fundamental problem that the Whitfield lab is addressing is the high failure rate of
SSc clinical trials.Through analysis, the team has determined that the molecular subset (called
inflammatory, fibro-proliferative, or limited) a patient is in greatly determines the patient's
response to therapy. In most trials, only a subset of patients responds.The team is finding the
link between the responding patients and one of the molecular subsets.The work is ongoing,
but the team has identified drugs to target specific patient groups.The lab will continue to
expand the number of drugs that treat each group of patients in order to provide a rational and
data-driven approach to treatment.The Whitfield team has also developed a diagnostic test to
determine a patient’s molecular subset, capturing the patient's gene expression signature at a
specific point in time.The lab has made the test available as a routine diagnostic test in Clinical
Laboratory Improvement Amendment (CLIA) certified labs, and will continue to develop and
refine this test to best help SSc patients.
Research Update
The Whitfield lab has moved beyond basic science investigation to translational research
that is impacting the success of clinical trials and patient treatment in the clinic.The goal of
Dr. Whitfield’s research has always been to take the findings from the lab and apply them to
patient research and care.The team is developing a diagnostic to ensure that the right drugs
get to patients who are most likely to benefit from them and is expanding its efforts to identify
therapeutic targets from data.
In a study submitted for publication, the lab performed RNA sequencing of patients with
scleroderma, which allows the team to read the sequence of genes in each patient's genome
and determine how highly or poorly those are expressed.The team found a naturally occurring
genetic variant that is common in the population affecting the strength of someone’s immune
response.This genetic variant appears to be enriched in the inflammatory scleroderma patients
that the SRF-funded work first identified, and this genetic variant is more common in African-
Americans who have the more severe form of scleroderma.The team has shown that patient cells
with this variant have stronger immune responses, producing more of the cytokine IL6 that may
contribute to disease severity.
DR. WHITFIELD ON THE SRF AND
COLLABORATION
I began my career in cancer research but was
brought into scleroderma research by the SRF
and immediately realized this is a disease in
which I can make a major impact. In my 15
years of working in this disease, we have gone
from a very poor understanding of what causes
the disease to being able to create molecular
models of what is initiating and driving the
disease. Watching these developments and
knowing we can have an impact on patients’
lives keeps me committed to scleroderma
research.
DR. WHITFIELD ON THE FUTURE OF
Scleroderma research has been advancing at
lightning speed. We have a better understanding
of how SSc develops and progresses and a
better understanding of molecular targets, and
we are seeing clinical trials that are starting to
show promise. I am optimistic that we will have
therapies that work within the next few years.
DR. WHITFIELD AND THE ‘AHA’
MOMENT
My “aha” moment was in the last two years,
when I realized we now have the data to draw
and test a plausible model that shows how
the disease progresses in patients. This model
enables us to predict key cell types driving the
disease and which ones should be targeted
therapeutically. Having data-driven models of
disease progression in people is key to finding
therapies.

22
FUNDED PROJECTS
FREDRICK WIGLEY, MD
FRANCESCO BOIN, MD
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO SCLERODERMA CENTER
In collaboration with
NATIONAL HUMAN GENOME RESEARCH INSTITUTE
Genome Research in African-American Scleroderma Patients (GRASP) Study
Project Summary
Systemic sclerosis (SSc) is an autoimmune disease with unknown etiology and complex
pathogenesis.The disease has an increased rate of incidence among African-Americans (AAs)
and is associated with worse clinical outcome.The Genome Research in African-American
Scleroderma Patients (GRASP) project is a genetic study of AA scleroderma patients with
the primary goal of defining how differences in the genome (DNA) of these patients explain
why this population has a higher susceptibility for the disease and predisposition for more
severe clinical manifestations. Previous epidemiological studies, including genome-wide
association studies, identified several genetic factors but were primarily focused on Caucasian
patients of European descent, and most of the genes identified have not been replicated in
other populations.The GRASP consortium, which consists of 19 centers across the country,
has collected 1,000 AA patient samples. Clinical data will be organized into a comprehensive
database at Johns Hopkins University, and the analysis will be performed at the National
Human Genome Research Institute.The overall goal of GRASP is identifying novel genetic
variants associated with SSc susceptibility, providing insight into pathogenic pathways, and
identifying novel clinical phenotype-specific therapeutic targets.
Research Update
In phase one of the study, the GRASP consortium successfully completed enrollment and
collected comprehensive clinical information and DNA samples from patients and healthy
controls.The team at the National Institutes of Health/National Human Genome Research
Institute has performed whole exome gene sequencing on 400 scleroderma samples and 400
control samples.The second phase of the study, which is currently underway, will conduct a
genome-wide association study on the entire GRASP cohort (1,000 AA SSc cases and 1,000
healthy controls). During phase three of the study, the data generated will be analyzed and
validated.
When complete, this comprehensive study of a very large cohort of AA scleroderma patients will
allow researchers to determine specific variations in the sequence of the bases of the DNA that
may explain the increased risk to develop scleroderma, and the relevance of patients’ ancestral
descent or lineage in determining this susceptibility. In addition, understanding the differences
between the scleroderma patients’ DNA and their African-American and Caucasian non-
scleroderma counterparts may help clarify the underlying mechanisms causing an earlier onset
of disease, more aggressive and rapid damage to internal organs such as the lungs, and ultimately
the increased mortality observed in African-American patients.
DR. WIGLEY ON GRASP
The GRASP study is a foundation for further
studies to understand why the disease process
is worse in a particular group of patients, but
it will help us understand what is triggering
scleroderma in all patients. This will be a
big step toward a therapeutic intervention.
If we can find the gene that triggers a more
aggressive type of the disease, then we can turn
that gene off. It may be done with drugs that
are available to us now. It is a matter of getting
insight into the process so that we can trigger it.
DR. BOIN ON THE FUTURE OF
This study will provide an increased
understanding of the disease, and that means
the research is better informed. The future is
bright for scleroderma research, and technology
today allows us to ask questions and get them
answered in a short time. The cost is still high,
but foundations like the SRF that are dedicated
to specific diseases are crucial to reaching a
goal that 10 years ago would have been very
difficult to pursue.
DR. BOIN ON THE SRF AND
COLLABORATION
The partnership between clinical investigator
and basic scientist is what will allow us to find
a cure for this disease. The SRF sets the perfect
example and provides the opportunity where
researchers and clinician can come together and
share strengths and experiences and collaborate
to find a cure. The SRF has the ability to quickly
identify projects that will have a big impact on
the disease and move them forward. In GRASP,
the SRF was instrumental in bringing the right
people together and providing the resources to
launch the project.

23
FREDRICK WIGLEY, MD
The Johns Hopkins Scleroderma Center of Excellence
Project Summary
The mission of the Johns Hopkins Scleroderma Center is to cure scleroderma with a strategy
combining three different approaches: 1) provide comprehensive and compassionate care to
scleroderma patients; 2) perform research to discover new treatments that will end the human
suffering caused by scleroderma; and 3) provide education to patients, trainees, physicians, and the
public about all facets of scleroderma.
The Center has a talented group of individuals dedicated to the Center's mission, including five
faculty memebers who are physician-scientists with the years of experience and superb clinical
skills to care for patients with scleroderma.The Center's physician-scientists work with other
physicians and researchers at Johns Hopkins, other academic institutions, the National Institutes
of Health, and industry.Their research includes both clinical and basic science projects.
Research Update
The Johns Hopkins Scleroderma Center has demonstrated success in the areas of patient care,
research, and education. Its clinical care program sees approximately 60 patients per week and
has more than 3,200 patients enrolled in its research database.The research program is involved
in 20 projects that span clinical investigations to activity supporting basic laboratory work.
Teams at the Center interact with others on research to better understand the mechanism of
activation of the immune system, work to better define the process of tissue fibrosis, and evaluate
and understand the causes and consequences of organ damage.The Center is now one of the
largest scleroderma specialty centers in the world.
The Center is playing a critical role in the effort to understand why African-Americans
with scleroderma often have more serious disease symptoms and tend to have poorer overall
outcomes.The Center is one of 19 centers across the country involved in the Genome Research
in African-American Scleroderma Patients (GRASP) investigation. As the Center treats a
significant group of African-American patients, the GRASP study was designed by Johns
Hopkins team members in partnership with Dr. Kastner, SRF Scientific Advisory Board
Member and Scientific Director of the Intramural Program at the National Genome Research
Institute. (See page 22 for more details on the GRASP study).The genome work in the GRASP
study has the potential to reveal important biological pathways that cause disease for all patients
and may provide insight leading to new therapies.
In addition to concentrating on patient care and research, the Center has an active training and
educational mission. Working with postdoctoral fellows (most frequently rheumatologists),
medical students, interns, and residents is a key part of the educational and training practice.
DR. WIGLEY ON THE SRF AND
COLLABORATION
The strategy of the SRF is unique because it
not only provides significant financial support
for research, but it also brings together clinical
and basic science researchers to collaborate on
novel approaches to understanding the biology
of the disease.
The spirit of the SRF is to foster collaboration
between researchers and to link clinical
investigators to basic science researchers
investigating the underlying mechanisms of
disease process. This “translational” approach
of bringing clinicians’ bedside experience,
clinical tissue samples from patients, and basic
lab expertise and techniques together to focus
on human disease is a very powerful way to
discover new understanding of disease process
and ultimately new therapies.
DR. WIGLEY ON THE FUTURE OF
I have great hope that we will accomplish
our mission of discovering a cure for
scleroderma in my lifetime. I know that
since we started the Center, we have made
a huge difference in the lives of patients
by providing comprehensive state-of-the-art
care for all aspects of the disease. We have
therapy that is working for many aspects of
the disease that we did not have some years
ago, including reversing scleroderma renal
disease, controlling gastrointestinal dysfunction,
stopping the progression of interstitial lung
disease, managing the muscle and joint
disease, dampening the severe consequences
of Raynaud’s, slowing skin progression of the
disease, and helping with emotional support.
The way we now manage a patient with
scleroderma has been greatly influenced by
lessons we learned in our research program.

24
A PATIENT’S PERSPECTIVE
FACING SCLERODERMA
A Patient’s Story
By Lisa Goodman-Helfand
“I have lived with scleroderma for
30 years. Some may consider it
unfortunate luck that I’ve spent
75% of my life battling this disease.
There are days when I would agree.
However, most days, I count myself
lucky. The alternative to living
with scleroderma is dying from
scleroderma.”
When I met Queen Latifah this past year at Cool Comedy–Hot Cuisine in Beverly Hills, I
thought I had been connected to the Scleroderma Research Foundation for a short time.
As it happens, we have been on a converging path for a while. The SRF has supported
my doctor, the research in her clinic, and her colleagues and mentors in a collaboration
that stretches back years. My scleroderma is currently stable and most days, I count
myself lucky. By the time I got to Dr. Monique Hinchcliff (in my opinion, one of the best
scleroderma clinicians in the world) at Northwestern, where the SRF-supported clinicians
have been investigating the disease for years, my life depended on their care.
My scleroderma story starts in 1985, at the age of 10, after two years of misdiagnoses
of my symptoms. Growing up, all I knew about scleroderma was what my mom had told
me, which was that my skin was tighter than most people’s. She did not tell me that I
would develop telangiectasias (red spots) all over my body, that my limbs would deform,
or that my fingers and elbows would leak calcium. I discovered these cool party tricks for
myself. My mom determined it was best to raise me as a “normal” healthy child, and we
rarely talked about my disease.
Growing up with scleroderma posed many challenges, particularly as scleroderma transformed
my physical appearance at the height of adolescence. My internal organs remained stable until
spring vacation during my freshman year of college. As part of the same battery of semi-annual
tests, doctors reported a reduction in my lung capacity.They also found some sclerosis on my lungs.
One doctor suggested that I drop out of college to undergo intensive treatment to stop the disease
progression. It was then that I learned the true gravity of scleroderma. I recall asking the doctor,
“Could I die from scleroderma? People don’t die from scleroderma….do they?” The doctor told me
that while new medications are being explored all the time, most people with systemic scleroderma
do not survive more than seven years, due to the toll the disease takes on all of their major organs.

25
This was long before you could Google anything you wanted to learn on the Internet.
Trembling, I entered the word “scleroderma” into the library computer and waited for the
results. I found a whopping seven articles on the subject and quickly retrieved each one from the
microfiche archives. Every article depicted scleroderma as a grim disease where people looked
disfigured and suffered from excruciating symptoms. I thought I might hyperventilate. My fear
was that I was going to get progressively worse, look like a walking skeleton, and ultimately die. I
would never get married, have children, be a teacher, travel, or enjoy life in a normal capacity.
Thankfully, we got a second opinion. While my test results did show that the disease had
affected me internally, this physician didn’t recommend dropping out of school and checking
into the hospital. Rather, he would put me on a new medication, penicillamine, to see if that
would prevent further progression of my disease. We would run all the tests again in six months
and see if my organs had continued to sclerose or if they remained stable.
After six months, my tests revealed that my condition had not improved, but it had not
worsened, either. I would continue to be tested semi-annually and as long as I remained stable,
there was no reason to be alarmed.Thirteen years passed and I remained stable. I married my
incredible husband and became a teacher. My condition went unchanged through my first
pregnancy, the birth of my son, and my second pregnancy.
In 2006, I suffered catastrophic complications after the healthy birth of my daughter and
remained in the hospital for 218 days after her birth. We will never know how large a role
my scleroderma played in what happened, but we do know that scleroderma masked some
symptoms of preeclampsia that went undiagnosed.This led to a massive infection and several
major surgeries and emergency events. More than once during my hospital stay, my family was
told my chances of survival were slim.
I nearly lost my life at the age of 31, partly because my high-risk specialized physicians were
not armed with rudimentary knowledge about scleroderma. Instead, I missed out on nearly a
year of raising my children, and spent years in physical, occupational, respiratory, and speech
therapy to recover from what I believe was an avoidable long-term health crisis. With the
support of hundreds of friends, family, and medical professionals, I learned to walk, talk, eat, and
independently breathe again. My children are now 12 and 9.They are the sun, moon, and stars in
my sky. I am thankful to report that my scleroderma is once again stable.
After my medical trauma in 2006, I began seeing Dr. Hinchcliff, an SRF investigator and
clinical researcher. Shifting my care to the team at Northwestern illustrates the importance of
research and comprehensive care. Dr. Hinchcliff is one of the most dedicated, passionate, and
skilled doctors I have encountered.The work she is doing has changed my life and the lives of
the hundreds of patients she treats.
Not everyone can go to a Specialized Scleroderma Center or see an SRF-funded investigator, so
it’s critical to raise disease awareness and advance research for treatments. It is my sincere hope
that research prevents patients from having to suffer, and that education and awareness keeps
others from learning the hard way.
For me, “Research is the Key.” Until a cure is found, research is bringing a better understanding
of the disease, which is paving the way to new and improved treatments. At one point in my life,
all I could hope for was stable disease. Now, for me, and for others, progress makes a difference.
As patients, scientists, medical professionals, and supporters, I know we won’t give up until we
have a cure.
“There have been times in my life
when scleroderma has brought me to
my knees. Times when the pain was
so unbearable, I thought I could not
persevere. Here’s the thing though,
we are only given one life, one body,
and a finite amount of time to live on
this beautiful planet. How we choose
to spend our time is up to us. We are
the authors of our own life story.”
Lisa Goodman-Helfand is a teacher, parent, author, and
professional speaker. Her writing and her story have been
featured on Chicago’s NBC, ABC, CBS, and FOX news
affiliates, and online in People, Cosmopolitan, Redbook,
Seventeen, and The Daily News. In 2015, she launched
an awareness campaign, #sclerodermaselfies Face Off
For Scleroderma via social media. She is the author of
Does This Hospital Gown Come With Sequins? and a blog
detailing her experiences, Comfortable in My Thick Skin.

Research Roundtables
Launching in the Bay Area in Winter 2016, the
SRF Research Roundtable series will provide
an in-person forum for patients and physicians
to effectively connect with scleroderma thought
leaders and key researchers. In small group live
settings to be held across the country, patients,
caregivers, and other stakeholders will have
the ability to interact with leading clinicians,
researchers, and representatives from the pharmaceutical industry
to learn more about emerging therapies and what is being done to
improve the quality of life for those living with scleroderma.
26
BEYOND THE RESEARCH
EDUCATING THE SCLERODERMA COMMUNITY
Website–New Site Launching in 2016
In 2016, the SRF will debut its new website. As
a primary communications channel, the new site
will more effectively keep the community up to
date on scleroderma, clinical trials, treatment
centers, and the very latest news and research
information. Better search, easier navigation,
and the latest relevant content will help keep
patients, researchers, caregivers, and medical
professionals updated. Stay tuned.
Webinar Series
The SRF Webinar Series is an interactive
series, rich and relevant for the scleroderma
community including patients, medical
professionals, and caregivers. In an information-
packed hour, the live sessions bring medical
experts to the scleroderma community to
provide the very latest on current and emerging
treatments. Sessions are archived and made
available on the SRF website at www.srfcure.org/for-patients/webinars.
E-Newsletter
“Insights” is the SRF’s monthly e-newsletter.
Recipients get the very latest news and
information from the scleroderma research
and treatment world.The e-newsletter covers
a wide variety of topics, so patients can explore
aspects of the disease, therapeutic advancement,
and clinical trials, as well as how SRF-funded
research is making progress. Insights also
highlights the community of supporters, volunteer fundraisers, and
Cure Crew campaigns from all over the world, working in partnership
with the SRF to raise funds and awareness for lifesaving research.
Conference Leadership
The SRF was honored to support and
participate in the 14th
International Scleroderma
Workshop held at the Royal Free College in
the U.K.The biennial meeting has grown from
29 participants in 1990 to more than 250, with
workshops and courses spread out over four
days.The workshop draws participants from
across the world from pharmaceutical and
biotechnology companies and research and academic centers.
The SRF also participated in the American College of Rheumatology
conference, held this past year in Boston. In addition to using the
opportunity to interact with and provide clinical, research, and program
information to rheumatologists from all over the globe, the SRF hosted
scleroderma thought leaders to facilitate discussion among investigators
to further accelerate research efforts and cultivate relationships among
industry and academia.
As an innovator and leader in scleroderma research, the SRF is uniquely qualified to
provide the community with the most up-to-date and relevant news and information
about complications, treatments, and related research, all free of charge. Building a better
understanding of scleroderma among patients and caregivers, and facilitating research
information helps us execute on our goal of improving care for patients and moving
research more quickly toward a cure.
Social Media
Patients, caregivers, and medical professionals can find and follow us
on social media in order to stay up to date with the very latest news
affecting the scleroderma research community.
facebook.com/SRFcure twitter.com/SRFcure
instagram.com/SRFcure youtube.com/SRFcure

Cure Crew
The SRF’s Cure Crew volunteer fundraising and awareness program
was built on the SRF principle that collaboration is essential.The
network of committed Crew Members continues to grow, with events
happening from coast to coast. From golf tournaments to “rock
your concert t-shirt” dance parties to a five month-long walk on the
Appalachian Trail, Crew Members are turning their own unique ideas
into research dollars.
We are deeply grateful for the energy and enthusiasm of members
like Lynn Jensen in Lincolnshire, Illinois, who hosted Band Together
for Scleroderma in honor of her sister. Jensen raised nearly $25,000 on
a single night and, notably, shared the need for scleroderma research
in her community. In the coming year, we look forward to sharing the
story of Natalie Hyde, who will be walking the Appalachian Trail from
May to October in honor of her mom, Mary Katherine, who continues
to bravely fight scleroderma after her diagnosis more than 32 years ago.
Stay tuned for updates on her progress.
27
RAISING FUNDS AND AWARENESS
Cool Comedy–Hot Cuisine
Cool Comedy–Hot Cuisine is the SRF’s signature fundraising and
awareness-building event that takes place in Los Angeles, New York,
San Francisco, and now, Las Vegas. Hosted by SRF Board Member Bob
Saget, headlining comedians at our 2014-2015 events included Bill Burr,
Whoopi Goldberg, George Lopez, and John Oliver in New York, Bill
Bellamy, Jay Leno, and musical guest Ben Folds in Las Vegas, and Jim
Gaffigan, Jeff Garlin, Jimmy Kimmel, and musical guest Grammy®-
award winning artist John Mayer in L.A. Also, as they have done since
the first event, SRF Board member and Bravo TV Top Chef Master Susan
Feniger, along with fellow Top Chef Master Mary Sue Milliken, provided
their unique culinary talents.The SRF thanks presenting sponsor
Actelion Pharmaceuticals and each of the generous donors that helped
us raise more than $1.4 million from these events to advance the SRF’s
groundbreaking research program.
Spring Research Challenge
For the second year in a row, the SRF provided its donors with the
opportunity to participate in the Spring Research Challenge.This year’s
challenge, sponsored by SRF Chairman Dr. Luke Evnin and Deann
Wright, supported the work taking place in the lab of Dr. Antony
Rosen.The results of Dr. Rosen’s groundbreaking study, published
in Science in 2014, identified the role of cancer as an initiator of
autoimmunity in a group of scleroderma patients (read more about this
on page 18). We thank all of those who participated in helping to raise
$150,000 to support this work.
Increasing awareness of scleroderma is critical. Each new person who learns about
this life-threatening illness and supports the important work underway to find better
treatments and a cure brings us closer to achieving our mission.
Cool Comedy–Hot Cuisine NYC (L-R): John Oliver, George Lopez, Whoopi Goldberg, Bob
Saget, and Jeff Ross.
Cool Comedy–Hot Cuisine LA (L-R): John Mayer, Bob Saget, Jimmy Kimmel, Jeff Garlin,
Don Rickles, John Stamos, Jim Gaffigan, Brad Grey, Jack Black

Scleroderma
research
and education
constitute 87%
of SRF expenses.
Research 72.6%
Education 14.1%
Fundraising 7.5%
Management &
General 5.8%
Total 100%
The SRF receives
no government
funding and is
entirely dependent
upon charitable
gifts.
Statement of Financial Position
*For the fiscal years ending April 30, 2015, and 2014
2015 2014
ASSETS
Cash & Cash Equivalents 1,020 1,340,171
Investments 2,130,326 1,279,620
Other Current Assets 77,259 25,210
Contribution Receivable 936,550 646,928
Property and Equipments, Net 16,976 4,078
TOTAL ASSETS $ 3,162,131 $ 3,296,007
LIABILITIES AND NET ASSETS
Liabilities
Accounts Payable 8,973 161,423
Other Current Liabilities 26,991 26,849
Research Grants Payable 0 0
Total Liabilities 35,964 188,273
Net Assets 3,126,167 3,107,734
TOTAL LIABILITIES AND NET ASSETS $ 3,162,131 $ 3,296,007
28
Statement of Activities and Changes in Net Assets
*For the fiscal years ending April 30, 2015, and 2014
2015 2014
SUPPORT AND REVENUE
Support 2,408,106 2,082,788
Other Income 67,348 (64,419)
TOTAL SUPPORT AND REVENUE $ 2,475,454 $ 2,018,369
EXPENSES
Research 1,782,995 1,235,218
Education 346,595 325,962
Fundraising 184,611 162,096
Management and General 142,820 141,611
TOTAL EXPENSES $ 2,457,021 $ 1,864,887
INCREASE IN NET ASSETS $ 18,433 $ 153,482
NET ASSETS, BEGINNING OF YEAR $ 3,107,734 $ 2,954,252
NET ASSETS, END OF YEAR $ 3,126,167 $ 3,107,734
FINANCIAL INFORMATION
Expenses: FYE 2015 Support and Revenue: FYE 2015
Individuals 46%
Corporate 20%
Foundations 29%
Other Income 2%
Payroll Campaigns 3%
Total 100%

The Scleroderma Research Foundation’s success and
continued progress depends upon charitable gifts.
We are deeply grateful to the many individuals,
companies and foundations whose support–at
every level–helps to fund lifesaving medical
research.
Corporate Partners
The SRF values its partnerships with industry. The Corporate Partners Program was
established in 2013 to create meaningful relationships with companies while providing
necessary support to the Foundation’s top research and education initiatives. The SRF
recognizes its Corporate Partners and thanks them for their ongoing commitment to the
health and well-being of scleroderma patients:
Actelion Pharmaceuticals
Since 2001, Actelion Pharmaceuticals has
been supporting the SRF in its concerted
global effort around scleroderma research
and the quest to find a cure, including the
development of young investigators who
will be the future of scleroderma research.
29
The following pages acknowledge those who contributed $250 or more during the Foundation’s
fiscal year ending April 30, 2015.
CHARITABLE GIFTS
Actelion Ltd. is a leading biopharmaceutical
company focused on the discovery,
development, and commercialization of
innovative drugs for diseases with significant
unmet medical needs.
Actelion is a leader in the field of pulmonary
arterial hypertension (PAH). Its portfolio of
PAH treatments covers the spectrum of the
disease.
Founded in late 1997, with now over 2,400
dedicated professionals covering all key
markets around the world including Europe,
the U.S., Japan, China, Russia, and Mexico,
Actelion has its corporate headquarters in
Allschwil/Basel, Switzerland.

Gifts $5,000+
ABD Insurance and Financial Services Inc.
Actelion Pharmaceuticals US Inc.
AE Charitable Foundation
Albert J. Klail Trustee
Anne Heyman-Seth Merrin Family Fund
Apricus Biosciences Inc.
Arthur Zimtbaum Foundation Inc.
Kristen Baker Bellamy and Bill Bellamy
Baker Hughes Foundation
Melissa Beyeler
Biogen IDEC
Beau Boeckmann
Howard Brill
Brillstein Entertainment Partners
By Dzign
Caddie Central Management Services LLC
Carolines on Broadway
Catalyst Advisors
Jennifer Giottonini Cayer and Paul Cayer
Jeffrey T. Chambers and Andrea Okamura
Dr. Anna Chapman and Mr. Ronald O. Perelman
Jan Chatten-Brown and Jack Brown
Clay Lacy Aviation
Compass Group and Eurest
Cox Business
Doris Elaine Davis
Delta Air Lines
Becky Denlinger, Moving Forward for a Cure
Chef Traci Des Jardins
Rich Eisen
Doug Ellin
Mr. and Mrs. Robert L. Emery
Laura Engel
Dr. Luke Evnin
Mary and Tim Evnin
Dr. and Mrs. Anthony B. Evnin
Chef Elizabeth Falkner
Susan Feniger and Liz Lachman
Mr. and Mrs. John Fisher
Ben Folds
Jim Gaffigan
Galpin Motors
Jeff Garlin
Genentech Inc.
Gilead Sciences Inc.
Chef Suzanne Goin
Whoopi Goldberg
Rob Goldstein
Wayne Gorsek
Brian Greenspun
Brad Grey
GSO Business Management
Bill and Marjorie Handel
Health & Medical Research Charities of America
The Hill Family Charitable Foundation
Mr. and Mrs. Eugene Hill III
Hogan Lovells
John Hummer
Ironshore Insurance
Steve and Marilyn Joffe
Kao Family Foundation
Saville Kellner and Katie Lewis
James C. Kimmel and Molly McNearney
The Knoller Family
Diane Kosmach and Michael Schumacher
Joni Kosmach, Joan Kosmach Memorial Fund
Mark Kosmach, Joan Kosmach Memorial Fund
Kraft - Engel Management LLC dba Kraft-Engel
Management
Lake Industries
Mr. and Mrs. Robert Larkin Jr.
Mr. and Mrs. Matthew F. Law
Eliz Lee and Eric Kau
Jay Leno
LICA Local Independent Charities of America
Jon and Jill Liebman
Mr. and Mrs. John T. Livingston
Lloyd’s America Inc.
George Loening and Kimbrough Towles
Todd Logan
George Lopez
Rhonda and Jeffrey Mace
30
CHARITABLE GIVING
Jennifer Cayer is a loyal SRF donor who came to the Foundation as a biotechnology executive over 15 years
ago. After losing an aunt to scleroderma in the early 1990s, Jennifer met both founder Sharon Monsky and
current board chair Luke Evnin. As a veteran executive of biotechnology and pharmaceutical companies, she
“loved what [Sharon Monsky] was trying to do by focusing on basic research.”
“Scleroderma was neglected at the time by research institutions and pharmaceutical companies,” says Jennifer.
“I wanted to be part of a solution.”
Since meeting Luke and Sharon and learning about the organization’s mission and research program, Jennifer
has provided support to the SRF because “I believe that we will find a cure and the Foundation has been at the
forefront of finding that cure.” She attributes recent advances–the increased insight into underlying biology of
this extremely complicated disease, the influx of scleroderma-related clinical trials, and the recent investment in
drug development by the pharmaceutical industry–as fueled by the pioneering work of the SRF. “Progress has
been made due to the SRF. They are integral to finding a cure.”

EMPLOYER MATCHED GIFTSThe power of partnership extends beyond the SRF’s Corporate Partners Program. We
salute not only each individual who talks with his or her employer about the possibility of
matching a personal gift made to the SRF, but also the leaders of the organization who
have made a commitment to stand by their employees–doubling their efforts to find a
cure for scleroderma. The following organizations have generously matched contributions
made by their employees:
Actelion Pharmaceuticals US Inc.
Allstate Giving Campaign
American Express Charitable Fund
AT&T Employee Giving Campaign
Bank of America Foundation (Matching Gift Program)
CA Technologies
Chevron Humankind Matching Gift Program
Chubb Federal Insurance Company
CNA Financial
Endurance Services Limited
The Gap Foundation Gift Match Program
GAP Inc. Giving Campaign
The GE Foundation
Genentech Inc.
Give With Liberty Employee Donations
Goldman, Sachs & Co. Matching Gift Program
Google
Host Hotels & Resorts L.P.
Hewlett-Packard
HSBC Philanthropic Programs
Johnson & Johnson Family of Companies
JP Morgan Chase Foundation
Marathon Petroleum Matching Gift Program
McKesson Foundation
The Merck Foundation
Microsoft Matching Gifts Program
Nestle
Pfizer Foundation Matching Gifts Program
PG&E Corporation Campaign for the Community
QVC
Select Equity Group, Inc.
Silicon Valley Community Foundation
T. Rowe Price
The Thomas & William Gilbane Foundation
Travelers Community Connections
Truist
United Way of Northern New Mexico
Amber Mandir
Margaret E. Lee Irrevocable Trust
Marion Ternstron Endowment Fund
John Mayer
Martha L. McHenry
Jodi McIver, Moving Forward for a Cure
Ray McKewon
The McKewon Family Fund
Mr. and Mrs. Andrew J. Merin
Michael Meyer
Annette Michaelsen, Joan Kosmach Memorial Fund
Mary Sue Milliken and Josh Schweitzer
Rick Moonen and Roni Fields
MTS Health Partners LP
Ray Muldaur and Natalie Ige Muldaur
Kate and Laura Mulleavy
National Christian Foundation
NFL Network
Kevin J. O’Connor
John Oliver
Dana Owens and Eboni Nichols
Paramount Pictures Group
Mr. and Mrs. Robert Pearlman
Frank W. Peltzer
The Perelman Family Foundation Inc.
Pinnacle Construction of Austin Inc.
Dr. William Prinzmetal
R.M.L.V. LLC dba RM Seafood
Sandy Ribich, Joan Kosmach Memorial Fund
Christos Richards
RMR Capital
Rodarte
Mr. and Ms. Russell Rosenblum
Bob Saget
San Ysidro Investors LLC
Steven Scarpa
Mark Scher
Diane Kosmach Schumacher, Joan Kosmach
Memorial Fund
Dr. Michael Seiff
Beth Selbe Lasita, Betty Selbe Scleroderma Research
Foundation Golf Tournament
Select Equity Group Inc.
George L. Shapiro
Chef Nancy Silverton
Harry Singer
Mr. and Mrs. Astor Stave
Mr. and Mrs. Bob Stave
Sutherland Asbill & Brennan LLP
Clinton Ternstrom
The Venetian Hotel, Las Vegas
Tiamo Resort, Bahamas
Victoria’s Secret
Wilfried P. Vincent
Kevin Weiss
Sandy and Barbara Wernick
Dr. Stephen J. Williams
The Witkoff Group LLC
Steven Witkoff
Robert Witkoff
Deann Wright
George D. Yancopoulos
Chef Sherry Yard
Mr. and Mrs. Michael J. Zaccaro
David Ziegler
Jeff and Caryn Zucker
31

Gifts $1,000−$4,999
Kenneth and Joy Abrams (Nancy Gayle Abrams Memorial
Research Fund)
Mr. and Mrs. Robert Adamo
Shari Adler and Edward I. Adler
Mrs. Geraldine Ah Moo and Mr. Baron Ah Moo
Dr. and Mrs. Bruce M. Alberts
Mr. and Ms. Reynold R. Alexander
Mr. and Mrs. Mark Allister
Mr. and Mrs. Richard Ambrosini
American Idol, Fox Television
The Apatow-Mann Family Foundation
Mr. and Mrs. John J. Apruzzese
Mr. and Mrs. Neil Aranha
The Art Laboe Foundation
The Artists & Athletes Alliance
Dr. and Mrs. Narbeh Bagdasarian
Baker & McKenzie LLP
Bank of America
Alan Baral and Sharre Jacoby
Mr. and Mrs. Aldo Baraldi
Mr. and Mrs. Richard L. Baskin
Mr. and Mrs. Richard L. Baumgarten
Justin Bayle
Reg and Margaret Bayley
Joachim and Nancy Bechtle
David Becker
Bellini Foundation
Robert Berliner
Helena and Peter Bienstock
Border Grill, Los Angeles
Mr. and Mrs. Carl Briggs
Mr. and Mrs. Bruce Buyers
Dr. Pablo Cagnoni and Ms. Lesley Hathaway
Calix
Crystal and Anthony Campitiello
Cantor Fitzgerald Relief Fund Administration
Capell, Barnett, Matalon & Schoenfeld LLP
Mr. and Mrs. Philip Capell
Cara Communications Corp
CenturyLink
Cirque du Soleil
Community Health Charities of the West
Kim and Rob Coretz
Jerry T. Cormican
The Corroon Foundation
Mr. and Mrs. Bob Costas
Mr. and Mrs. Kevin Crotty
Mr. and Mrs. Bronson Crouch
The Cumella Family
Dacor Kitchen Appliances
Dancing with the Stars, ABC
Dave Matthews Band
Tanika Day
DBGB, New York – Chef Daniel Boulud
The Di Bona Revocable Trust
Diem Investments Inc.
Marianne Dinicola
Mr. and Mrs. Charles R. Duvall
Dworsky Law Firm
James R. Dwyer and Sally J. Nagel
Edmonds & Nolte PC
Edward and Lida Robinson Charitable Trust
Trenton Eisenberg
Mr. Scott Emerson
Mr. and Mrs. Peter E. Engel
Entertainment Tonight, CBS Television
Dr. and Mrs. Ervin Epstein Jr.
Mr. and Mrs. Christian P. Erdman
Esperanza Productions
Mr. and Mrs. James A. Fitzpatrick Jr.
Wendy R. Flanagan and Christopher B. O’Malley
Mr. and Mrs. Gregory A. Foster
The Frascella Family Charitable Fund
Fraternal Order of Eagles, Brisbane Aerie #3255
Dr. and Mrs. Henry M. Friess
Mr. and Mrs. Joseph Funaro
Dr. Jeffrey Gevirtz
Chef Rick Giffen
Glenn Rogers PLLC
Wendy G. Glenn and Marianne Lowenthal
Alan and Barbara Goldenberg
Dr. and Mrs. Ronald Goldman
Mr. and Mrs. James Gorman
Seth Green
Greenberg Traurig
Dr. William Greene
Jill Grey
Therese Griebel
Mr. and Mrs. Alan Grossbard
Dr. and Mrs. Bruce Grossman
Mr. and Mrs. Philip Gurin
Dr. Keith Gurnick
Mr. and Mrs. Michael Halper
Mr. and Mrs. Edward P. Harding
Mr. and Mrs. Marshall Heinberg
Alison Hersel
Amy K. Hewitt
Alyssa Hill
HMS Host
Mr. and Mrs. Tom Hoberman
Nancy Hollander and Kenneth Sunshine
Brittany Holt
Hospital for Special Surgery
Mr. and Mrs. Gene W. Hovendon
HPI Real Estate Inc.
Hunter Insurance
Mr. and Mrs. Brian M. Hunter
ICM
Mr. and Mrs. Jack Irmscher
Mr. and Mrs. Rich Jacobson
Janie’s
JMP Securities
Mr. and Mrs. Cornelius Kaestner
Chef Bruce Kalman
Mr. and Mrs. Alan B. Kaminsky
Mr. and Mrs. Robert W. Kanter
Kenneth Kao
The Kasin Family Foundation
Ms. Nancy Kieffer
Mr. and Mrs. Larry King
Mrs. Debra Kleban and Mr. Paul A. Rupke
Klein Tools Inc. Charitable Foundation
Dr. Daniel J. Klein
Paul Klingenstein and Kathleen Bole
Mr. and Mrs. Steven Koch
Joan A. Kosmach
Summer Kowal
David S. Koz
Mr. and Mrs. Marc S. Krieger
Marie C. Kronman Charitable Lead Annuity Trust
Mr. and Mrs. Robert Kushell
Mr. William R. Kyle
David and Nancy Lacey
LAGS Spine & Sportscare Medical Center Inc.
Robin Leach
Dorothy Lee
Mr. and Mrs. Mark Lehmann
Mr. and Mrs. Michael J. Lerner
Steven and Linda Levine
Mr. and Mrs. Mark Levine
Lionsgate Entertainment Company
Deborah R. Liu
Live Nation Worldwide Inc.
William T. Lockard and Alix Marduel
Shannon Looney
Los Angeles Dodgers
Lori Loughlin and Mossimo Giannulli
Lyons Family Foundation Inc.
Mr. and Mrs. Scott Mace
Mrs. Miriam S. Machida
Kenneth Mack
Magical Elves
Mr. and Mrs. Klaus L. Mai
Mr. and Mrs. Mark F. Mai
Mandalay Bay Resort & Casino, Las Vegas
David Mandelbrot and Shekinah Lamblin
The Marilyn and Jeffrey Katzenberg Foundation
Mr. and Mrs. Ronald Markoff
Dr. William M. Markson and Mrs. Jane Sanders Markson
Joshua G. Marnocha
Wayne L. Martin
Mr. and Mrs. Martin Massey
Mr. and Mrs. Steve Mayer
A.R. McDaniel
Thomas W. McDowell
Mr. and Mrs. Bruce McIver
Media Rights Capital
Peter Melnick
Michael’s, New York and Santa Monica
32
CHARITABLE GIVING

Michael Abby Modell Foundation Trust
D’arcy Miell
Mr. and Mrs. James R. Moffett
Dr. Thomas Mohr
Camilia Monet and Daniel Chisholm
Dr. and Mrs. Richard J. Morse
The Mortar Foundation Inc.
Norman Mosher
Mother Lode Holding Company
Mr. and Mrs. John Mulhern
Erin Murtha
Rita Mao Myrick
Arthur Nahatis
National Christian Foundation Indiana
Mario Nava and Crystal Cabrera
Neiman Marcus
Nevada State Bank
Christopher Ng
Thuy Nguyen
Diana Nyad and Bonnie Stoll
Mr. and Mrs. Mike Orabovic
Constance Owen
Quynh Paris
Eric Passon
Joe Peleska Memorial Open
PHE Inc.
Mr. and Mrs. John W. Pohlen
Mr. and Mrs. Edward Poole
Mr. and Mrs. Paul S. Pressler
Lois A. Pribanic
Ralph & Emily Simon Family Foundation
Rao’s New York
Angela Arias Renneke
Mr. and Mrs. Robert L. Reuss
Mr. and Mrs. Robert M. Reznick
Mr. and Mrs. H. John Riley Jr.
Brian Ritz
The Nancy P. and Richard K. Robbins Family Foundation
Mr. Laura Rosso and Mr. Ever Santana
Christie Salomon
Robin Salyer
Michael J. Saupp
Dr. and Mrs. Mark Schena
Christine A. Scherzinger
Mr. and Mrs. Todd Schuster
Loleta E. Scott
Dr. James R. Seibold and Ms. Tracey Thompson
Mr. and Mrs. Barry P. Seidel
Cynthia R. Shoss and David Watson
Simon Property Group
Delaney Simon
Craig Smith and Laura L. Pope
J. Bradford Smith
James R. Smith
Linda M. Sorge
Southern Wine & Spirits
Southwest Gas Corporation Foundation
St. Nicholas Greek Orthodox Church
Mr. and Mrs. Peter Stabler
The Staenberg Family Foundation
Robert R. Stark Jr.
Starz
Bruce Stein and Susan Stremple
Mr. and Mrs. Paul Stein
Andrea Stern
Mr. and Mrs. Kenneth Stillwagon Jr.
Peter and Donna Stone
Dr. Elizabeth Stoner and Dr. David Cowburn
Sandy Streator
Dr. and Mrs. William Swenfurth
Roselyne C. Swig
Sysco Las Vegas
Sysco Resources Services LLC
Kimbir Tate
Mrs. and Mr. Annette T. Teodoro
Mr. and Mrs. F. Duncan Terry
Thompson & Knight Foundation
Louise Tighe
Mr. and Mrs. Jack Topal
Mr. and Mrs. Michael P. Trapani
Trinity Publications
Twin City Auto
Carole Ungvarsky
University Medical Center
Peter Van Vlasselaer and Anne Van Camp
Scott J. Voeller
Lucy R. Waletzky MD
Stacey G. Webb and Scott Webb
Scott Weinger and Rina Mimoun
Mr. and Mrs. Steven S. Weiser
Westmount Asset Management Inc.
The Winnick Family Foundation
Patricia Wong and Austin Kim
Charles C. Yaney
Frank Zini
Carmi D. Zlotnik and Elizabeth Crawford
Jerry and Janet Zucker
33
When Cheryl Grossman was 38 years old, she began having strange symptoms–swollen feet and hands
–without any explanation. After many visits to various doctors, she was diagnosed with scleroderma. At
the time, scleroderma was a relatively unknown condition with only three major books available on the
disease. “These books gave the mortality rate as five to seven years,” says Cheryl. “I thought I wouldn’t
live past 40 years old.” After being introduced to Sharon Monsky by former SRF board member Todd Logan
in the 1990s, Cheryl became involved in the Trails to Sails fundraising event in Chicago. She supported the
event for three straight years, and in 1995, her family raised $13,000 to support the Foundation. “I was
really proud of them,” Cheryl remembers.
Fast forward to 2015. Cheryl has managed her disease with what she attributes to “attitude and
support” for over 25 years. Since that first meeting with Sharon, she has been an ardent supporter of the
SRF because, as Cheryl attests, “the SRF conducts the best research in a variety of areas and at many
institutions with a broad reach.” Why does she give to the SRF? Cheryl has a simple answer: “It’s a small
community that shares a common problem. I want to reach out and help. That’s why my money goes
where it does…to support those who are doing good work.”

Gifts $250−$999
Dr. and Mrs. Anthony P. Adamis
Airco AC and Heating Co.
Eric Alfuth
Mr. and Mrs. Thomas A. Alich
Shirley L. Allister
Mr. and Mrs. Scott Alore
Amazon Smile Foundation
Jane Anderson and Tess Ayers
Shawn Anderson
Michael Arruda
Margaret Artz
Mr. and Mrs. William L. Asmundson
Edward Asner
David M. Atcheson
Rida L. Au
Aureole, New York – Chef Charlie Palmer
Mr. and Mrs. Gregory Baecher
Anne H. Bages
Charlotte Bailey
Suzanne I. Bailey
Dr. Cameron Ball
Mr. and Mrs. John H. Bamberger
Barbuto, New York – Chef Jonathan Waxman
Eliana Barriga
Caleb L. Barton and Jordan Eastwood
Mr. and Mrs. John Bassett
Lisa Belo Mocho
Mr. and Mrs. Mark E. Bengtson
Bernardos Painting
J.B. Bernstein
Birmingham Independent Insurance Agents Inc.
Dr. and Mrs. Neal Birnbaum
Dayel Biver
Blais Insurance
Blau & Associates
Rahul Bose
Sean R. Boyan
Luann Boylan
Mr. and Mrs. Andrew Bradford
Mr. and Mrs. Gary W. Brannum
Jordan Bratman
Bruce Brierley
Noel Bright
Mr. and Mrs. David Briones
Kathleen A. Brokaw
Andy Brokmeyer
Dennis D. Broughton
Jeffrey Brown
Chad Brown
Ho U. Brown
Mr. and Mrs. Thomas E. Brunell
Mr. and Mrs. W. Lee Bull
Kristal Burkholz
Mark C. Burns
Mr. and Mrs. James Burrows
Loretta G. Butler and Mark Butler
Canyon Ranch Spa, Las Vegas
Karen Capello
Mr. and Mrs. Harold Careway
James Caron
Mr. and Mrs. Aaron J. Carr
Steven Cassell
Cheryl B. Ceballos
Century 21 Farm and Forest Realty
Cetera Realty Advisors
Michael Chang
Tyrone Chang
Alisa Chanpong and J.P. Amateau
Mr. and Mrs. Chris Charlesworth
Cherry Creek Inc.
Denise Chilow and Simon Bloch
Mr. and Mrs. Blake J. Chinn
Mr. and Mrs. John B. Christy
Mr. and Mrs. Daniel P. Clarin
Mr. and Mrs. Curtis Coffman
Mr. and Mrs. Ian Cohen
Jared S. Cohen
Mr. and Mrs. Dennis A. Coit
Mack Elbert Coker DDS, MS and Mrs. Margaret
Cook Coker
Ryan Conley
Mr. and Mrs. Mark Connolly
Nancy H. Corbett
Mr. and Mrs. Albert C. Corbin
Craft, Los Angeles – Chef Tom Colicchio
Craig’s – Los Angeles
Mr. and Mrs. Jerry W. Craig
Mr. and Mrs. Vladimir Cuperman
CUT, Las Vegas – Chef Wolfgang Puck
D. & L. Painting Inc.
Mr. and Mrs. Robert E. Dailey
Dr. George Q. Daley and Ms. Amy Edmondson
Mr. and Mrs. Frank A. Dalle-Molle
Annmarie D’Amico
Marcela C. Dangot
Robert C. Daum
Michael DeFranco
Vivian H. Detter
Joyce A. Dever
Mr. and Mrs. Dennis Dillon
Alexandre Dohrmann
Douglas and Katherine McCormick Family Foundation
Samuel L. Dubin
Teresa W. Duggan
Debra Dulay
Robert H. Dungan
Laverne Dunn
William F. Dusek
Mr. and Mrs. Donald Duval
Timothy J. Dziak and Coleen Sweeney-Dziak
Chester Dziel
Patrice Eiff
Dr. Jaci Eisenberg
Mr. and Mrs. Adam Epstein
Mark E. Epstein
Gavin Ernstone
Mr. and Mrs. Scott Feinstein
Ben Feldman and Michelle Helyn Mulitz
Allyson L. Ferer
Fishtail, New York – Chef David Burke
Shane Flann
Thomas M. Fontana
Mr. and Mrs. David Fontenot
Judith L. Forman
Drew Foster
The Fox Foundation
Barry Frandsen and Audrey J. Wilkicki
James H. Frank
Chef Michael J. Frauenheim
Cantor Chayim Frenkel
Peter Friedlander
Mr. and Mrs. Steven Friedlander
Curt Friedman
Eva Futch-Faldt
Mr. and Mrs. Eric Gabrielsen
Mr. and Mrs. Michael Galloway
Letizia R. Gasparetti
Gato, New York – Chef Bobby Flay
Gene Northup Real Estate LLC
Dr. and Mrs. Edwin J. Gevirtz
Marilyn Gevirtz
Troy H. Geyer
Anthony Giannini and Allison Saget
Dr. and Mrs. Ronald Giordano
Mr. and Mrs. Steven Goldenberg
Mark T. Gombar
Dr. William Gonda and Dr. Sally A. Sehring
George Gottesman
Michael L. Gottfried
Grammercy Tavern, New York – Danny Meyer
Donald B. Greenberg and Beverly Daniels-Greenburg
Suzy Greenberg
Mr. and Mrs. Benjamin Griffin
Grill Concepts
Mr. and Mrs. Michael L. Grinberg
Josh Groban
Mr. and Mrs. Andy Guagenti
Marc Gurvitz
Dennis L. Hadden and Marcia Reska-Hadden
Dan Hagenseker
Stacey Hager
Chef Ilan Hall
Mark Victor Hansen
Daniel Harper
Nellie T. Hay and Susan C. Hay
Kimberly D. Hedrick
Joseph Hegleman
Iris Heimes
Cynthia Heit-Welch
Mr. and Mrs. David Helfand
Janet R. Hemley
Gail Hemmer
Deborah Y. Henderson
Frank J. Herberg
Steve Hernandez
Louis E. Hewitt and Susan Ciani
Dr. and Mrs. Alan J. Hill
Dr. Susan E. Hinman
Hinoki and the Bird, Century City
Gary Hobbib and Rachel A. Sussman
Joseph O. Hollomon
Mr. and Mrs. Phillip H. Holm
Dr. David Hsu and Ms. Emilie Cheng
Mr. and Mrs. Kenneth R. Hudson Jr.
Mary Lou Hughes
Mr. and Mrs. Stephen Hughes
Gregory J. Hwee
ICE Design Factory Inc.
ICP America Inc.
Donna Isaacson
J & S Trading LLC
Edward Charles Jackenthal
Robert Jackenthal
Mr. and Mrs. Roger Jackson Jr.
Michelle R. Jacobs and Graydon B. Fisher
Dr. Barry Jaffin
James’ Beach, Venice Beach
James Jean
Allison Hastings Jernigan
Jerome C. Zamarin Financial Services
Jacqueline Jetter
Shane Johnson
Elaine V. Jones
Fletcher Jones
Scott Jones
Mr. and Mrs. David Joys
Mr. and Mrs. Kevin Kasha
Mr. and Mrs. Lawrence M. Kasper
Dr. Regis B. Kelly and Dr. Rae Lyn Burke
Mr. and Mrs. Alan Kersh
Keyes Charitable Trust
Travis Keys
Mr. and Mrs. Roger Kimber
Mr. and Mrs. Robert J. Klein
Evan Kletter
Kleven Institute
Mr. and Mrs. Jeremy J. Kline
Jessica Klinger
Mr. and Mrs. Brian Kozlowski
Joseph Kozlowski
Mr. and Mrs. Arnold Kramer
Ilene E. Kramer
Kenneth A. Krieger and Daphne Pappas
Mr. and Mrs. Calvin Kuebler
Mr. and Mrs. David Kuebler
Mr. and Mrs. Kevin L. Kuebler
Patricia M. Kuhar
Mr. and Mrs. Richard Kusterbeck
Patrice B. La Tourelle
Helen Ladd
Landmarc, New York – Chef Marc Murphy
Denise Langer
Linda L. Lasater, PhD and Lee Perry
The Laugh Factory
John P. Lawler Jr.
Mr. and Mrs. Alan Lazar
Mr. and Mrs. Kenneth P. LeBlanc
Kaitlon E. Lee
Mr. and Mrs. Shaun Lee
Anna Lefler and Hugh Fink
David Lekich
Leo Lemere
Alison L. Levant
Linda Levine
Libson Twin City Auto
Lindsey Consulting
Little Owl, New York – Chef Joey Campanaro
Steven Livitz
Dorothy D. Lofstrom
Los Angeles Tourism & Convention Board
Deb Love and Rob Corn
Betty L. Lovell
Joan Lowry
Mr. and Mrs. Stephen Lund
Mr. and Mrs. Thomas E. Luria
Arthur Lynch
Matthew Mace
Eishin Machida
Madonna del Grappa Fund
Marcella A. Magiera and Samuel Kenberg
Mr. and Mrs. Tyler Malkuch
Manhattan Beach Post, Manhattan Beach – Chef
David LeFevre
Ronald Marr
Mr. and Mrs. William Martin
Sharon Martinez
34
CHARITABLE GIVING

MASLUC Inc.
Mr. and Mrs. Scott Matis
Mr. and Mrs. William M. Matthes
Harold Mattison
Mr. and Mrs. Michael Mattone
Maude, Beverly Hills – Chef Curtis Stone
Tracy Maurstad
Mr. Michael J. McCall
Mr. and Mrs. Ben McClain
Mr. and Mrs. Timothy McClure
Deborah McGravey
Mr. and Mrs. William P. McGuire
Lynn McKee
Mr. and Mrs. Gary McKenna
Mr. and Mrs. Les S. McNair
Mr. and Mrs. Michael Meiners
Wallace D. Mersereau
Mr. Jeff Meunier
William A. Michie
Mr. and Mrs. William J. Milani
Darya Miller
Dr. and Mrs. Laurence Miller
Mr. and Mrs. Philip G. Miller
Dr. and Mrs. Stephen D. Miller
Milo and Olive, Santa Monica
Mr. and Mrs. Fred C. Monday
Ramelle Ferer Monsky
David L. Montanari and Sara L. Rubin
Morgan Stanley
Mr. and Mrs. E. Daniel Morton
Mary J. Morton
Mozza, Los Angeles
Mud Hen Tavern, Los Angeles
Mr. and Mrs. William Hugh Munn II
Joseph Muroff
John W. Murphy
Mr. and Mrs. Tom Murphy
Patricia M. Musanti
Mr. and Mrs. Robert Nadel
Mr. and Mrs. Danny Naftaly
Kevin B. Navaille and Joanne Winningham
Nellystella
Mr. and Mrs. Arnold S. Nelson
Mr. and Mrs. Harold A. Nelson
Marina Nicola
Mr. and Mrs. Jack M. Nilles
Nine Design
NoMad Hotel, New York
NutraLife
Dr. Susan Nyanzi
Mr. and Mrs. Jeff Oberschelp
Mr. and Mrs. Mark D. Olson
Oregon Health & Science University
Mr. and Mrs. Michael Osterman
Jaclyn Pagano
Andy Page
Mr. Richard Pascoe
Linda A. Patterson
Lillian Peloquin
Mr. and Mrs. Daniel Pepper
Katy Perry
Kurt C. Peterson
Russell Petroni
Mr. and Mrs. William A. Petzold
Piermont Wealth Management Inc.
Robert Pietrucha
Plaza Travel
Jeff Polakowski
Mr. and Mrs. Andy Polansky
Mr. and Mrs. Jeffrey S. Pop
Darla Postil
John & Sue Prange Trust
Paula Prentiss and Richard Benjamin
Pro-Air Engineering Inc.
Providence, Los Angeles – Chef Michael Cimarusti
The Ralph & Eileen Swett Foundation
Red Rooster, New York – Chef Marcus Samuelsson
Mr. and Mrs. John W. Regoli Jr.
Remede Spa
Vicki Resch
Dr. and Mrs. Steven Carr Reuben
Carol Risley and Brian Dixon
Jean Ann Robertson
Mr. and Mrs. David Rockman
Mr. and Mrs. J. Britt Rodgers
Mr. and Mrs. Robert H. Rosenthal
Karen Ross
Mr. and Mrs. Anthony E. Rothschild
James Rothschild
Mr. and Mrs. John R. Russell
Richard Russell
Mr. and Mrs. Charles D. Ryan
Kelly Ryan
Sharon K. Ryan
Brenda Saget and Mark Darling
Guarrin Sakagawa
L. Frank Salisbury
Dr. Aditi Sanatinia
David G. Saxon and Gail P. Thelin
Dr. and Mrs. Jay Schapira
Robert Schatz
Pamela S. Scheeringa
Bradley J. Schenck and Jill Chizever
Mr. and Mrs. Joseph Scher
Mr. and Mrs. Stephen Scherr
Amy Schumer
Linda Sciuto
Secura Insurance Companies
Gladys M. Seiter
Cheryl Seminario
Lisa Shamus
Mr. and Mrs. Robert Shapiro
Sidney E. Shapiro
Mr. and Mrs. Larry Shar
Lela Sharp
Shaw Industries Group Inc.
Mr. and Mrs. Steve Shepard
Mr. and Mrs. Roger W. Shuler
Dr. Jeffrey Siegel and Ms. Dianne McCutcheon
Robert Sigal
Michael J. Silverstein
Lynda Simonetti
Mr. and Mrs. Scott Slesinger
Dr. and Mrs. Stan Smazal
Mr. and Mrs. Austin Smith
Gregory Smith
Matthew Smith and Randall Romero
Robert P. Smith
Mr. and Mrs. Robert Sockolov
Heather Somaini
David Soucy
South Shore Golf Club at Lake Las Vegas Resort
Mr. and Mrs. Michael A. Staiano
Mr. and Mrs. Paul F. Stanley
Norman Steinberg
Kerstin Stempel
Stevee Danielle Hair and Makeup Salon
Jerilee Stevens
Avery J. Stone
Mary Jo Stout
Structures PE LLP
Stuczynski Trucking & Excavating Inc.
Mr. and Mrs. John S. Sunseri
Mr. and Mrs. Mark D. Sutherland
Jannis Swerman and Mr. Don Rubinstein
Peter Tadin
Dr. Ken Takesita
TAO, Las Vegas
Mr. and Mrs. Steven Taslitz
Emily Taylor
Tertulia, New York – Chef Seamus Mullins
Texas State Fire Protection
The Bazaar, Beverly Hills
The Breslin, New York
The Fresh 20
The Georgian Hotel, Santa Monica
The Law Offices of Marc Risman
The Wallace, Culver City
Todd Thicke and Marybeth Maloney
Craig Thomas and Rebecca Alson-Milkman
Martin Tiernan
Time Investment Co. Inc.
TNT Abstract LLC
Lynne Tomczak
Dr. and Mrs. Mark S. Trachtman MD
Mr. and Mrs. Jim Trekell
Dr. and Mrs. Brett A. Trockman
Mr. and Mrs. Jay B. Turbeville
Dr. Nathan W. Turner
Mr. and Mrs. Nicholas Tuso
Utility/Keystone Trailer Sales Inc.
Deborah Vickers Grisamore
Mir Wais
James Walker and Kimberly Johnson
Mr. and Mrs. Michael Walsh
Lisa A. Walter
Walther Partners Inc.
James E. Wanner
Mr. and Mrs. Kevin Waters
Bradley Weinberg
Jill Weinberg
Mr. and Mrs. Robert Weinberg
Dr. Anthony Weiss
Scott E. Welch
Robert Westbury
Mr. and Mrs. Kurt C. Wheeler
Dr. and Mrs. Alan J. Whitman
Laura Wiederaenders and Allison Harden
Dr. Horatio Wildman and Dr. Jessica Gordon
Mr. and Mrs. Mark C. Williams
Todd D. Willsie
Win-Win Entertainment
Dr. Paul Wolters and Dr. Amy Sehnert
Sheree Wong
Wortham Insurance & Risk Management
Mr. and Mrs. David J. Wright
Mr. and Mrs. Gary Wright
Mr. and Mrs. Steven Wright
35
Originally from the Midwest, Jane Johnson has called California her home since graduating from college. When meeting Jane for the first
time, she seems just like any other busy mom with a husband and two children–she is bright, enthusiastic, and friendly. However, Jane
has lived with the debilitating effects of scleroderma since she was diagnosed. She has often struggled to perform simple tasks for her
children. As Jane recalls, “I would have trouble helping them tie their shoes or making breakfast. Some treatments even made it hard to
be close to them when they were sick. You want to connect with your children.” The effects of the disease on Jane have made her a vocal
advocate for working together to find a cure.
In addition, Jane has been an active fundraiser, coordinating walks in the San Francisco Bay Area and supporting a local golf tournament where
she was introduced to SRF leadership. She became more aware of the focused and high-impact research taking place. “[The SRF] wants to get
a cure quickly. I am amazed and encouraged by the research that the SRF is pursuing. The SRF gives me hope - hope that a cure will be found
not only in time for me but in time for all of us. Then we can go back to being productive and give back to others the way we would like.“

IN HONORGifts made to the Scleroderma Research Foundation in honor of special people and
occasions have a significant impact on our research. The following individuals were
recognized during our fiscal year by family and friends who made a gift in their honor.
Alex
La Verne Bayliss Allen
Julie Armon
Barbara Arnold
Ruth Waugh Arnouts
Claudia Azevedo
Scott Bader
Stuart Bader
Neal and Diana Barlow
Reed Barrios
Lorraine J. Batton
Melita Belgrave
Doris Bernstein
Doris Biber
R. Catherine Biondo
Deborah Bischoff
Jane Bittinger
Jason Blank
Bianca Boyle
Cynthia J. Brannum
Peggy (Joey) Briggs
David and Suzanne Brown
Lori Butler
Bette Callaway
Howard Capell
Ana Fernandez Carmona
Jeffrey Charapp
Geri Cohen
Tyler Coleman
Joni Collier
Joanne Condon
Ashton Cooper
Judith Corbin
Linda Kay Counterman
Alvin Crowl
Grace Cucchisi
Jack and Beverley
Cusimano
Frank D’Ambrosio
Maureen D’Ambrosio
Murchison
Marcela Dangot
Melanie Davila
Kathleen Day-Coen
Dee Dee and Brian
Deckman
Dana Delany
Becky Denlinger
Susan F. Duffy
Kay Llewellyn Eadie
Vicki Ehrenman
Trent Eisenberg
Maria Erland
Susan Feniger
Heath and Jane Freeman
Yvette Gambrel
Andrea Garber
Marilyn and Ed Gevirtz
Norman Gevirtz
Vera Sue Golden
Lauren Gomez
Lisa Goodman-Helfand
Angie Graves
Nick Greenfield
Christopher Guadagnini
Lynn Guance
Anne Hansen
Aimee Haydinger
Nancy Hazlton
Erica Hessel
Amy Hewitt
Eloise Hocking
Kim Hodge
Monica Holmner
Tim and Inga Hsieh
Roberta S. Hunter
Michael Hutson
Shelly Jenkins
Lynn Jensen
Stephanie Jensen
Jane C. Johnson
Jen Kao
Kathryn Karson
Hayley Kavrell
Kevin Kazaluckas
Saville Kellner and Katie
Lewis
Toni Kennedy
Margaret Kinaitis
Ashley Kinney
Katherine Klos
David Knoller
Wendy Knox
Joni Kosmach
Bryan Kramer
Charles and Lana Kramer
Scott Kramer
Teresa Kramer
LaRae Kuhar
Christine Lakin
Dianne Lambert
Fran Langan
Barbara Lankosz
Carolyn Laura
Lau Yung Lee
Nancy Leskanich
Amy Levine
Beth Lichty Wagoner
Andrea Lindstrom
Vicki Londer
Janice Lowry
Jim Lucia
Jeannine Lynch
Miriam Machida
Dave Mahlo
Marina Malvar
Francis Marino
Eveline Marks
Andrea Marsden
John Martin
Neil Matatall
Andrea Matis
Lorraine Maury
Royalene McDonald
Katie McGrath
Shaun and Deborah
McGravey
Sheri McKenna
Lynn Merel
Olivia Erani Miller
Nancy Mischel
Katherine Moore
Michele Moran
Barbara Musco
Bert and Rita Myrick
Lori Newman
Andrea Oakland
John Ogunkeye
Jane Owen’s Niece
Stephanie Packer
Mr. & Mrs. Sid Pearlman
Kathy Peterson
Teresa Phillips
Vicki Pimental
Diana Pozen
Diana Pralgo
Shelley Raaths
Amanda Reese
Stephanie Regan
Ingrid Renken
Gina Roberts
Jerry Robinson
Mary Romano
Michael Romeo
Adam Saget
Bob Saget
Suzanne Salerio
Bobbi Salmon
Jan Sanders
Joseph Scher
Mark Scher
Reuben Scherr
Cindy Schlett
Adriane Schorr
Vicki Schultz
Linda Scott
Kristi Seiter
Bernie Selig
Janet Paulman Settle
Barb Shepard
Ruth Silberman
Ellen Singer
Joan Smith
Bertha Soto
Phoebe Stein
Gerry Stuczynski
Jane Shirah Stump
Barbara Sunseri
Angela Switzer
Angela Taylor
Gina Thompson
Jane Timmins
Wilma Jane Timmins
Judy Tratos
Fendi Vadevoulis
Karen Vasquez
Lorna Verdone
Leticia Villalobos
Mara Walters
Kris Weaver
Hanna Rose Weber
Shanae Webster
Julie Weinstein
William Whitehurst Sr.
Heidi Wilensky
Kristen Wilkens Sidari
Maryclaire Wilkinson
Gloria S. Woods
Deann Wright and Luke
Evnin
Cynthia Yagi
Joan and Michael Zaccaro
36
TRIBUTES

IN MEMORYAll of us at the Scleroderma Research Foundation express our deepest sympathy to the
families and friends of the following people in whose memory gifts were made during our
fiscal year.
Lawrence C. Brooke
Marjorie Brown
Megan A. Brown
Taitum Makaila Brown
Linda Bruce
Barbara An Budd
Karen Kummer Bybee
Barbara Byrnes
Regina Callahan
Jean Simone Campion
Joseph Cancilla
Mario Canelon
Anna Marie Capalupo
Michael Capello
Marilyn Carminati
Ronald J. Carminati
Mary Louise Carolan
Beatrice Carter
Mary Libby Casagrande
Kathryn Catanzaro
Lucy Cernuda
Judy Chaplin
Rona Greenberg Chapman
Bernard Charapp
Marie Chiaramonte
Sonja Chow
Virginia Chowdhry
Philip Christ
Betty Chutkow
Brian Cincotta
Lucy Jane Clarin
Iris Ladd Clarke
Eileen Clary
Barbara Clifford
Natalie Cohen
Stephanie Coleman
William Collinsworth
Gerald Colson
Debra Comer
Kaelin Connolly
Patricia Connors-Zini
Judy Cottle
Nancy Gayle Abrams
Rose A. Adams
Penelope Allan
Hilda Allen
Miriam Almeida
Norma and Phillip Altus
Rosary Anselmo
Rosemarie Arenz
Elaine Aresco
Letty Armstrong
Cecile S. Atcheson
John W. Baer B.G. Ret.
Ginger Bailey
Gertrude Baird
Shirley J. Ballard
Bill Banks
Grandma Barhydt
Cynthia Barlup
Dorothy Bartlett
Susan Bash
Joyce Bauer
Thomas W. Bautz
Steven Becker
Margaret Beene
Margaret Belanger
Margaret Bellano
Shirley Belo Mocho
Nancy Ann Bennett
Dorothy Lucille Benoit
Susan Berger
Cynthia Beyerle
Suzzanne Mary Bickert
Lois Bieniek
Marie Blair
Mae F. Boulger
Lloyd Bowman
Carol Brannum
Diane Blanchard Brant
Marcia Borg-Jankowsky
Lora Brion
Kathleen Brkljacich
Larry Brooke
Frances Crane
Vincent Cresta
Lorie Crossland
James Crow
George and Jane Curran
Bob Dailey
Anna Damiani
Wanda Davis
Mary Jane De Sipio
George DeAngelis
Marie DeLee
Larry Delgadillo
Mary DeMartini
Honor Dempsey-Carter
James Di Giuseppe
Rosanna Di Marco
Jack Louis Dinicola
Celeste Doria
Eileen Dow
Dierdre Driscoll
Frank B. Duggan
Vernon Dunn
Marina Duque
Emma Duvall
Patricia Dziak
Betty Eckhard
Lori Edidin
John Ehrenborg
Mary Einspanjer
Rori Eisenberg
Iris Blatt Ellison
Cheryl A. Elmore
Sally English
Dominick Esposito
Thelma Ewell
Jenny Faenza
James J. Fecko
Anne Fedro
Laurie Feinstein
Alyce Ferrari
Elizabeth (Betty) Firing
Angela Fisher
37
In July 2015, the scleroderma community lost one of its most
courageous champions, Jeffrey H. Mace.
Since 2009, Jeff served on the Scleroderma Research Foundation’s
Board of Directors-this service built on a long record of contributing
to all who have been affected by scleroderma. Deeply committed
to building a better future for patients everywhere, Jeff devoted his
sharp intellect, time, energy, and resources to bringing greater public
awareness to scleroderma, including tirelessly lobbying Congress to
address the need for research funding and a cure.
Jeff was an inspiration, and he, along with all of the patients who have
passed before, leaves us with a more profound sense of purpose to fulfill
our mission. It is in his honor and memory that we will continue our
pursuit until a cure is found.
Thank you, Jeff. You will be missed.

Stuart Fishkin
Rosina Flaccavento
Dennis Flynn
Marty Folger’s Wife
Michael Forman
Gail Fournier
Stephanie Fradkin
Joyce Faye Freeman
Alan Freis
Rebecca Garcia
Catalda Gasparetti
Betty Gayle
Nancy Mao Gevirtz
Helen Gibbons
Jennie Gibson
Arleen Gilbertson
Dr. Leslie S. Gillespie
Peggy Ann Gilmore
Carole Goldman
Dorothy and George
Goldman
P.J. Gomez
Thomas B. Gonzales
Don Gooding
Barbara Gottfried
Sidney Gould
Amy Grabina
Sharonda Graham
Harriet Grauer
Gloria Grey
Wanda Griffith
Beverly Gromer
Sylvia Grossman
Margaret Guelker
Luke Guernsey
Sandra Hagen
Iona Hager
Brenda Hall
Haskell Herman Hall
Sally Seader Halperin
Julia Hansen
Mary Harrison
Abdul Aziz Al-Saif and
Mariam Hassan
Sandy Hazelhofer
Lawrence Heimes
Dorothy Heinlein
Jennifer Hemley
Bill Henderson
Roseline Hernandez
Cecil Bernard Higgins
Leilla Hill
Marilyn Hines
Kathryn Doub Hinman
Elsie K. Hoch
Shana Holland
Sally Holmes
Irene Horner
Gilbert Horrach
Sandra Housler
Mike Hovendon
Marcy Howard
Ruby Hullum
Donald Hurlbert
Mary Nell Hutchens
Terry Irmscher
Jack Irmscher
Catherine Jablonosky
Jay Jackson
Joan Jenkins
Joan Mitchell Jenkins
Ruth Jergensen
Dorothy Johnson
Bob Jones
Trinity Jones
Jane Joyce
Cindy Kamenitsa
Janet Kanzler
William Kanzler
Nina Karouna
Desmond Kay
Cathi Keilty
Joyce Deveau Kennedy
Priscilla Kenyon
Yasmin Khan
Michael Khoury
Ann Kleban
Susan J. Klein
Mort Lowenstein
Frank Lucero
Jo Lusk
Jeffrey Mace
Shigenobu Machida
Robert Mahler
Jeanette Malanowski
Brenda Malone
Catherine Manion
Elsie Manning
Joanne Marcus
Frank Marisi
John Marisi
Jerry Marmurek
Gloria Marotta
Jane Martin
Sharon Martinez
Marion Massey
Virginia Masters
Gale Hope Matis
Janice Mauro
Perry Mayes
Ruby C. McCall
Carol McChesney and
Brightric Brown
Mabel McClees
Mrs. Mitzi C. McGinnis
John McGraw Sr.
Laura McGuire-Weinfeld
Toni Medina
Elizabeth Megliola
Mary Mertz
Barbara Meyer
Marian Meyer
Bernice Michalski
Carol King Michie
Eve Milani
Mark Miller
Maria Minucci
Lena Moccia
Jodi Modell
Phyliss Monistere
Sharon Monsky
Erin Moore
Linda Moore
Nancy Moore
Lisa Morton
Helen Mosley
Marlene C. Moulis
Samuel Muhlfelder
Dolores (Lorie) Murphy
Sheila Hill Murray
Genevieve Musanti
Donna Musto
Sina Nahavandian
Elaine Nalbandian
Josh Narins
Ellen Nathanson
Valerie Niles
Laurie Noonan
Rose O’Brien
Julius P. Klement Jr.
Robert Knapp
Michael Korsunsky
Joan Kosmach
Yvette Kozin
Helmut Kramer
Karol Krenz
Bernard Kreppel
Joan Kroutil
Sandra Lea Kuebler
Donna Kuwada
Jeannie Kyle
Gae Celeste Lach
Edward Lackner
Theresa Lambert
Kerry Adair Larkin
Joan Lauer
Yuet Wa Law
Ted Leahy
Evenly Leavitt
John and Ann LeBlanc
Steven LeClaire
Dr. Peter Lee
Rita Leiter
Elizabeth Lemere
Dick Levine
Grace Liberato
Charles Lobosco
Mary Lofstrom
Betty Lovell
In Memory
(continued)
38
TRIBUTES
THE SRF
LEGACY
SOCIETY
When Sharon Monsky founded the Scleroderma Research Foundation, she wanted her
contributions to advance the care and health of scleroderma patients long after she was gone.
The SRF Legacy Society honors this noble goal by providing an opportunity for individuals who
would like to support the Foundation through a will, trust, designation, or other planned gift.
Given the thoughtful planning of a bequest, planned gifts are often among the most generous
and impactful.The SRF Legacy Society provides a way to appropriately thank donors who have
included the SRF in their estate during their lifetimes.
Involvement in the Legacy Society gives contributors the opportunity to enjoy the company
of others who want to make a lasting gift to the scleroderma community. Participation in the
Legacy Society inspires others to look toward the future and consider leaving a lasting gift that
will impact the SRF research program for years to come.

Anthony Oestreicher
Margaret Olson
Andy Oprondek
Tammy Wrinkle Orrick
Michael Oschin
Steven Ellis Pace
Isabelle Patten
Lois Jean Peal
Joe Peleska
Linda Pendergast
Debra Perri-Rainey
Allison Peterson
Grace Pezrow
Benji Piel
Dorothy Pietras
Shirlee Friedman Pilch
Victor Pilson, MD
Susan Pardue Piper
Robert Piraro
Melissa Pitter
Jerry Pivato
Beverly Pizzuto
Beatrice Pomeranz
Carlin Popke
Mary Porter
Cheri Potter
Helen R. Powers
Juana Prado
Dagmar Pulkkinen
Nancy Records
Mother Reichert
Virginia Reid
Ben Reiff
Eleanor Reiff
Crystle J. Reight
Martin Reiter
Renee Reiter
Gwen Renzullo
Ann Reynolds
Carol Reynolds
Barbara Rhoadarmer
Vicky Wooten Rhodes
Sydney Richards
Phyllis Riddle-Spears
William “Bud” Rifkin
Richard Rist
Debi Rizzo-Rivelli
Raymond Rizzo Sr.
Victoria Zbreznu Robbins
Sandra Yvonne Roeder
William (Bud) Roeder
Sam Romano
Joe and Sarah
Catania-Romeo
Loretta Ross
Emma Rowland
James Rubel
Sarah Rudolph
Roy Rufh
Virginia Russ
Iantha M. Rutledge
Ivan Sachs
Ben Saget
Dolly Saget
Gay Saget
Iyoume Salazar
Mary Salim
Michael Salyer
William Samuels
Adele Sanford
Suzanne Saupp
Leonard Savino
Susan Scarpellino-Tiernan
Leonard Schaub Jr.
Joseph Scher
Steven Schliem
Carla Scopeletis
Larry Scott
Brian Scully
Richard Segal
Darlene Malone
Segerstrom
Betty Selbe
Sandy Selfridge
David Sell
Rosa Shaw
Cheryl E. Shea
Temi Shorr
Vernon Shuler
Randi Shutan
Barbara Siffer
Jerry Sigman
John Sigman
Hal Silberstein
Cecille Silverberg
Dani Silverstein
Vanessa Simon
Jean Simonetta
Enid Smith
Patricia Taylor Smith
Viola “Marie” Smith
Jonathan Sobel
Rhoda Solow
Marco Sorge
Susan Spivack
Marian Spozio
Anthony A. Staiano
Robert Stearns Sr.
Eileen Steinhart
Donna Eishen Stephens
Sophie Stepien
Goldie Stern
Kyran J. Stevenson
Marjorie Stolker
Carole Stone
Eleanor Stone
James Robert Stovall
Albert Strauss
Thomas G. Stucky
James Sullivan
Rose Marie Tartaglia
Zara Taylor
Marion Ternstrom
Cecily Terra
Judith Terry
Betty Thomas
Elizabeth Howard Lacy
Thompson
Marjorie Thompson
Jane Tilly
June Timmerman
Norma Torres
Bernardo Hugh Tovar
Nancy Trosin
Carmela Trupia
Henrietta Truscello
Gwendolyn S. Turner
Marjorie B. Turner
Marie Teresa Valle
Cornelia Vanderlee
Eileen Van Der Wende
Martha Veloz
Karen Viets
Georgia Waddell
Sally Waddell
Marie Walker
Miki Walter
Marilyn Wanczyk
Jean Esther Waters
Marcie Weiner
Mary Weiner
Cheryl Westbury
David White
Sompit White
Sheila Wilke
Elizabeth Sue Williams
Robin Williams
Shirley Willman
Teresa Wilson
Bonnie Wiseman
Janet Wong
Bernice Wood
Donald Woodruff
Eugenia Ann Benke
Wright
Evelyn Lavon Wright
Nancy Wunschel
Carol Wurthman
Keith Yagi
Martha Jeanne Yanes
Celina Romero Ynzunza
Fay Young
Ruth Young
Beverly Zalut
Amedeo Zandona
Julia Zervos
Joseph P. Ziegler
Barbara F. Zimmerman
39
If you have included the Scleroderma Research
Foundation in your will or another planned gift, please
let us know so that we may honor you as a member of
the SRF Legacy Society.
For more information, please call the SRF at
800.441.2873 or email alexg@sclerodermaresearch.org
We are deeply honored to include the following individuals in the SRF Legacy Society:
Estate of Maria Anargyros
Estate of Harold E.Aust
Sylvia Marie Becherer RevocableTrust
Karen Fraley 2005 FamilyTrust
Marie C.Kronman Charitable Lead AnnuityTrust
Margaret R.Lee IrrevocableTrust
LaVerne B.McCrory
Martha L.McHenry
Estate of Neal McGuire
Neptune FamilyTrust
Estate of JeromeT.Osborne Sr.
FrankW.Peltzer
Anne D.Ramsier FamilyTrust
Dolly Saget
Mary ScottTrust
Cheryl E.Shea
Robert H.ShutanTrust
James Simon FamilyTrust
Estate of Helen I.Steffanus
ClintonTernstrom

220 Montgomery Street, Suite 1411
San Francisco, CA 94104
800.441.CURE | WWW.SRFCURE.ORG

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