SCLERODERMA FOUNDATION ANNUAL REPORT 2014

Ju
ly
Financial Report
1, 2014- June 30, 2015
SCLERODERMA FOUNDATION ANNUAL REPORT 2014
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On the cover;
Southern California
Chapter members
Emmanuel and Kristine
Munda, coordinated a
third-party fundraiser at
their children’s elementary
school.
Attendees at the 2014
National Patient Education
Conference enjoy some
photo opportunities at the
Actelion Pharmaceuticals
exhibit booth.
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A Message from the Board Chair, Joseph P. Camerino, Ph.D.
Dear Friends,
On behalf of the entire Scleroderma Foundation, I offer my most sincere thanks for your generous support of
the organization’s mission. Whether you made a gift to the Annual Fund, to our research program, through
one of the Foundation’s 22 chapters or as a volunteer of your time and talent, your commitment to the work
of the Foundation sustains it.
As chair of the national Board of Directors, I’m proud of the Foundation’s ongoing and daily commitment to
our three-fold mission of “Support, Education and Research,” which guides us in our work toward finding better
treatments and a cure, while supporting those living with scleroderma. Whether through our nationwide
patient support programs, our educational events, or our peer-reviewed research program, the work of the
Foundation is to secure a better future for all of those affected by this disease.
We are proud of this
productive year and the
strides that we have made
as an organization! Our
2014 marked the Foundation’s 16th anniversary, which
was filled with notable accomplishments. We reached
new heights in education and resources for both patients
and medical professionals, we continued to be a leader
in advancing scleroderma research, and we succeeded
in increasing awareness of this disease.
overarching focus remains
In this Annual Report, you will have the opportunity to
look back at the activities and achievements that took
the hope of a cure for
place in FY 2014. You’ll also see the financial report
scleroderma.
that encompasses our fiscal year (July 1, 2014 – June
30, 2015). The Scleroderma Foundation is financially
strong and I’m proud to serve an organization that has achieved significant financial stability at a time when
many other organizations continue to struggle. In challenging economic times, we’ve been able to sustain
and even grow programs, including our commitment to research funding and scholarships for patients to
attend our National Patient Education Conference.
The Foundation’s National Conference continues to grow. In 2014, more than 600 attendees attended the
16th annual conference in Anaheim, California making it our largest conference yet. This year’s educational
offerings were the most robust ever, with 79 presentations, half of which were offered for the first time. There
were many new features, including a scientific poster session and expanded youth program. Many of the
workshop sessions, including the opening and closing keynote addresses, were recorded and are available
to view on the Foundation’s YouTube Channel.
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Only those who see the invisible can do the impossible!
By focusing on the needs of those living with the
disease, we were able to enhance new resources this
year for both patients and the medical community.
The Foundation continued to leverage its website,
online tools and traditional print publications to
provide education to individuals about scleroderma
nationally and internationally. The Foundation’s online
discussion community hosted by Inspire grew over 45
percent in FY 2014. This resource continues to expand
as more people use the Internet to stay connected
with other members of the scleroderma community.
We are proud of this productive year and the strides
that we have made as an organization! Our overarching
focus remains the hope of a cure for scleroderma. Until
that cure if found, we remain committed to providing
the best possible resources and education for patients,
their families and the medical community.
Thank you for your belief in the Scleroderma Foundation, for your commitment to its mission and for being
part of its future.
We continued to raise awareness on several fronts.
June is designated Scleroderma Awareness Month
Chair, Scleroderma Foundation
in the United States and around the world. This
year, the Foundation teamed up with major North
American scleroderma organizations to develop an
awareness campaign that would let others know about
the disease and our cause. The “Hard Word. Harder
Disease.” campaign used a variety of outlets to get
the message out, including Facebook, Twitter and
Instagram. During Scleroderma Awareness Month,
we encouraged people living with scleroderma to
send us their “selfies”. The images exhibited the
beauty and courage of the scleroderma community.
They are being used for marketing, education and
outreach to promote education and conversations
about scleroderma.
I hope you’ll spend an equal amount of time reviewing
the list of donors honored in this report. Unfortunately, we cannot list every donor and donation, but
please be assured that every dollar given counts and
is important.
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Mission
Our Joint Committment to Those Affected by Scleroderma
The Scleroderma Foundation was established on January 1,
1998, through a merger between the West Coast-based United
Scleroderma Foundation and the East Coast-based Scleroderma
Federation. Both organizations had histories dating back to
the early 1970s. The merger united two groups sharing similar
missions, goals and programs to collaborate and support the
scleroderma community by funding important education and
research initiatives.
RESEARCH
Since its beginning, the Scleroderma Foundation has been a
leading provider of scleroderma research funding. This remains
the organization’s largest budgeted expense, with at least $1
million allocated to scleroderma research grants to new and
established scientists. Our research program works to foster
and support education among scleroderma research programs
around the world. The program has provided vital funding to
Today, the Foundation has grown to include a network of investigators to help advance their work to help unlock the clues
22 chapters and 160 support groups throughout the United to the scleroderma mystery.
States. Under the guidance of a 10-person Board of Directors,
a three-fold mission of support, education and research drives AWARENESS AND OUTREACH: TOGETHER WE ARE STRONGER
the organization. A full-time staff in the National Office, based
in metro Boston, manages daily operations.
Sharing the Scleroderma Story
SUPPORT
Many scleroderma patients and their supporters know that June
is Scleroderma Awareness Month. People around the world
With the help of its chapters and support groups across the make a special effort during the month and especially on, World
country, the Foundation connects people living with scleroderma. Scleroderma Day – June 29th – to let others know about the
These groups host patient education seminars to inform those disease and the obstacles patients face.
affected by the disease, including patients, caregivers, family
members and friends. Thanks to the work of the chapters The Foundation joined forces with the Scleroderma Research
and support groups, individuals living with scleroderma are Foundation and the Scleroderma Society of Canada to flex their
welcomed into a safe, positive and inspiring environment to social networks and reach people throughout the U.S. and Canada
learn more about the disease and hope for a better future. to help increase understanding of scleroderma.
Additionally, the Foundation offers a toll-free support line with
a dedicated staff to answer telephone inquiries and provide The “Hard Word. Harder Disease.” campaign utilized Facebook,
instructive materials and resources.
Twitter, and Instagram to help spread the word. The “Hard Word”
theme acknowledges difficult obstacles we encounter when
EDUCATION
talking about the disease, such as pronunciation (hard), tissue
condition (hard), and the many manifestations of the disease
Education has always been a vital piece of the Foundation’s (harder).
mission, and it remains committed to offering high quality
resources to patients, family members and the public to foster Patient photos along with a variety of other images translated
better understanding of scleroderma and the tools available to into compelling messages that showcased disease facts, hearthelp manage the disease. Each year, chapters and support groups felt struggles and invitations to help educate others. Created by
host a number of patient education events, fundraisers, galas, marketing firm, Brogan & Partners, the messages shared with
walk-a-thons and seminars to raise awareness about the disease. our Facebook and Twitter followers proved a powerful summons
In addition, the National Patient Education Conference serves as to help. News releases and editorial stories sent to traditional
an annual retreat for scleroderma community members, health and online media helped to get our message out to a new and
care professionals and others who wish to collect the latest wider audience.
information about scleroderma. The annual conference provides
a unique opportunity for people living with scleroderma to We believe that the partnership between the Scleroderma
connect with others and share their experiences in a supportive Society of Canada, the Scleroderma Research Foundation and
environment. Publications, such as the “Scleroderma Voice” and the Scleroderma Foundation has helped hasten the pace of
the weekly online “eLetter,” keep members informed about the increased understanding of scleroderma.
most recent scleroderma-related news.
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Our Collective
Support
Your contribution helps the Foundation empower individuals living with scleroderma to access
supportive tools and resources so they can improve their quality of life.
The Scleroderma Foundation provides invaluable support to
people living with scleroderma and their families. Through a
nationwide network of 22 chapters and 160 support groups,
these local resources host educational events and provide
local referrals and suggestions. Chapters and support
groups also offer a safe and intimate place to share feelings
and concerns.
For many individuals attending a support group is not an
option. The Foundation offers support and information through
a variety of different channels. Its website is an excellent
place for advice, collaboration and encouragement. The
Foundation’s dedicated team answers patient questions and
delivers critical information through printed material. Nearly
900 individuals received the free “Scleroderma Information
Packet” and an additional 2,000 were downloaded from our
website. The toll-free helpline (800.722.HOPE) and email
([email protected]) receives thousands of requests
for information about scleroderma.
The Foundation’s online discussion community hosted by
Inspire grew over 45 percent. Discussion board members
come from all around the world and many of them are
individuals struggling to find answers and resources about
living with scleroderma. Our online community serves as a
place of support, education and encouragement, especially
for those who are unable to attend local support group
meetings.
The Scleroderma Foundation also relies on the advice and
guidance of our Medical and Scientific Advisory Board with
regard to all medical issues. Medical Advisory and Scientific
Board members are distinguished researchers and clinicians
in scleroderma and related fields. The MSAB designated
six new Scleroderma Centers. After applications were
reviewed and approved the MSAB added the Interventional
Immunology Center and Winchester Chest Clinic of Yale
University, Seattle Children’s Hospital, Columbia Hospital
University Medical Center, New York Prespyterian Hospital,
The Pediatric Rheumatology Clinic of Joseph M. Sanzari
Children’s Hospital and Froedtert Hospital/Medical College
of Wisconsin. Scleroderma centers must demonstrate a
commitment to caring for people living with scleroderma.
This includes an ability to provide reliable resources, support
and care, in addition to performing ongoing research.
Finally, the annual National Patient Education Conference is
one of the greatest support resources that the Foundation
offers. This life-changing event is growing every year and
provides a unique opportunity to connect people affected
by the disease. These connections made at the conference
are some of the strongest bonds and support networks
that can be created for a person living with scleroderma.
More than 600 people from 10 countries came to Anaheim
to attend the 16th annual National Patient Education Conference in July, 2014. This year’s program was our largest
to-date, featuring 79 presentations, more than half were
offered for the first time. (See more information on page 11.)
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Partners in Education
Thanks to your support, we were able to achieve several important
advances in educating the public further about scleroderma.
Education is a central part of the Foundation’s mission.
Each year the Foundation strives to reach out to health
care professionals at annual conferences and tradeshows. The Foundation hosted exhibits at the annual
American College of Rheumatology (ACR), the American Thoracic Society (ATS) and the Pulmonary Hypertension Association (PHA). Foundation staff noticed a
tremendous growth in interest about scleroderma at
all three conferences.
The Foundation teamed up with the Stanford Medicine
and Inspire to foster conversations about scleroderma
through an interactive presentation on Google+
Hangouts. The panelists included Lorinda Chung, M.D.,
director of the Scleroderma Center and co-director
of the Multidisciplinary Rheumatologic Dermatology Clinic at Stanford, and Karen Gottesman, patient
services director for the Scleroderma Foundation of
Southern California. Audience members could submit
questions in advance to be answered during the live
video discussion.
The Foundatio launched a Continuing Medical Education series, the “Lung in Scleroderma”. This is a vital
tool in advancing awareness and unstanding of
scleroderma and its combid conditions among medical
professionals. Because scleroderma is a systemic disor-
der patients require the care of multiple specialists.
There is a great need to education medical professionals about the various manifestations of scleroderma to foster quicker, accurate diagnosis to
enhance patient outcomes and quality of life. The
CME program allows the Foundaiton to provide
continued education credits. The highly successful
series was held in San Diego, Calif., Columbus,Ohio,
Anaheim, Calif., Scottsdale, Ariz. and Seattle, Wash.
It also is available online.
The Foundation continues to leverage its website,
online tools and traditional print publications to
provide education to individuals about scleroderma nationally and internationally. The Foundations website (www. scleroderma.org) is a one-stop
resource for the scleroderma community around
the world. The website received over 1.2 million
page views.
The Foundation’s weekly “eLetter” continues to be
a reliable source of information for patients and
caregivers. Over 10,000 people receive our weekly
newsletter and that number continues to grow.
The Foundation also publishes a monthly version
of the “eLetter” just for medical professionals. This
subscription-based email alert provides informa-
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tion about advances in research, articles from scholarly
journals and more for the medical community.
The “Scleroderma Voice,” our quarterly magazine for Foundation members, educates members through in-depth
articles, medical journals and feature stories. With a reach
of over 9000 subscribers, “The Voice” continues to serve as
an important tool to inform the Foundation’s membership
about its efforts to fund more research, advance public
awareness, and advocate for more federal funding of
scleroderma-specific research.
The 2014 National
Patient Education Conference
More than 600 people from 10 countries came to Anaheim to
attend the 16th annual National Patient Education Conference
in July, 2014. This year’s program was our largest to-date,
featuring 70 presentations, with more than half offered for
the first time.
The general session began on Friday evening with an opening
keynote by Dr. Carol Feghali-Bostwick. The address featured
an informative look at scleroderma research and also how
scientific innovations, from Viagra to artificial sweeteners,
are often found by accident. The keynote ended with an
interactive Jeopardy-style game to test your knowledge
about research and the session’s key takeaways.
A new component of the conference was a scientific poster
session. Attendees had the opportunity to visit with 13
current scleroderma researchers and discuss their research
in an interactive and relaxed environment.
For the third year in a row, kids and teens who attended
the Anaheim conference enjoyed their own experience
through our growing youth program. The weekend was full
of engaging, fun workshops and activities. Participants in
the youth program can be patients, have a parent or other
close relative with the disease or be a sibling of someone
with scleroderma. The Kid’s Activity Room was staffed by
CoachArt, an organization that offers high-quality arts and
athletic activities. The activing room was run concurrently
with the other workshops.
Thanks to the generous support of donors and chapters, the
Foundation was able to offer 61 scholarships to first-time
attendees. Over $65,000 was raised for the Conference
Scholarship Fund. Through an application process, the
Foundation identifies individuals who would be unable to
attend the conference due to financial hardships.
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Pope Francis met members of FESCA before the Third
Systemic Sclerosis World Congress in Rome. Members
received special seating in St. Peter’s Square at the
Vatican for the Pope’s weekly general address. The Holy
See stopped to pray with some scleroderma patients as
he met the crowd in the square. He issued a blessing
to everyone participating in the World Congress.
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Partners
in
Research
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Though it is
important to help
patients who have
scleroderma live
well, the real hope
of all who have the
disease and their
loved ones is that
someday a cure will
be found.
The Foundation funded an
unprecented $2.2. million in
research grants in FY 2014 .
Administered by the Scleroderma Foundation’s Board of Directors and staff, the
program is guided by the advice of
world-renowned experts in scleroderma
research. The program casts a wide net
by soliciting proposals from a large pool
of scientific talent. It provides seed grants
for researchers to establish preliminary
data in the hope that a meritorious
project may lead to much larger and
longer-term grants from the National
Institutes of Health (NIH). The program
uses the NIH Peer Review Model and
funds only proposals that have scientific
merit. Our researchers often publish their
results in leading medical journals and
at major medical conferences.
In addition to funding ongoing research
projects, the Foundation remained
committed to its role as one of the
leading private funders of scleroderma
research through several new research
opportunities. The National Board of
Directors approved a new research grant
initiative The “Multi-Center Collaborative Research Grant” will support and
enhance collaboration between two or
more scleroderma centers at different
institutions. These partnerships will help
advance research on the disease while
bringing together talented experts from
several institutions to advance technologies at a quicker pace.
The Foundation continued to support the
science of new scleroderma researchers
hosting its second New Investigator’s
Conference. This initiative is designed
to strengthen the scleroderma research
enterprise by nurturing the next generation of research leaders and fostering the
emergence of a synergistic community.
The conference, held in Anaheim, Calif.,
brought together new investigators to
discuss their progress, facilitate interactions, receive constructive feedback and
offer career mentoring in a supportive
environment.
The 14th International Workshop on
Scleroderma Research was held at St.
John’s College at Cambridge University
in the U.K. with a record-breaking 275
delegates in attendance. Sponsored in
part by the Foundation, the confernec
focused on understanding the pathogenesis of scleroderma, utilizing current
therapies and identifying new targets
and treatment strategies - all leading to
better management for patients.
There been a major shift by pharmaceutical companies to target drugs to
scleroderma. This is a welcome change
and holds great promise for finding
new treatments. Many pharmaceutical
companies now have divisions focused
on fibrotic diseases, which is a significant
leap for scleroderma research. Advances
in research include the identification
of new and promising therapies for
scleroderma that are being developed in
academic laboratories, the repurposing
of existing drugs that are FDA-approved
for other diseases, such as cancer for
scleroderma use, and new discoveries
on mechanisms in scleroderma that may
explain the susceptibility to the disease,
its development and progression. Work is
ongoing to identify molecular abnormalities in different organs in scleroderma
patients as well as biomarkers in blood
that can serve to diagnose the disease
and/or predict its progression.
The Foundation has funded more than
$20 million in research grants, making
it the largest nonprofit supporter of
scleroderma research in the United States,
second only to the federal government.
This accomplishment has been made
possible by the generosity of those
who share our commitment to promote
and encourage research in the search
for a cure.
Although the cure remains elusive,
research funded by the Foundation and
government agencies has increased
understanding of many aspects of scleroderma and has enabled the development
of new therapies.
The Foundation extends its appreciation to the many researchers
and clinicians who have made the
research program possible and to
the many individuals, corporations
and Foundation chapters that have
contributed to raising funds for the
research grant program.
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2014 Research Grant Awards
Finding the Missing Puzzle Piece
The Marta Marx Fund for the
Eradication of Scleroderma
Douglas Faller, M.D., Ph.D., Boston
University School of Medicine
PKC Inhibitors as Targeted Therapeutics
for Systemic Sclerosis
Monica Brown, D.O., University of
Tennessee Health Science Center
17,20 (OH)₂D₃ Mediates Antifibrotic
Effects in Murine Models of Sclerosis
The Mark Flapan Award
JMinghua Wu, M.D., Ph.D., The
University of Texas Health Science
Center at Houston
New Insights Into Interferon Regulatory Factor 7 (IRF7) and Its Role in
Systemic Sclerosis
Megan Cooper, M.D., Ph.D., Washington
University, St. Louis
The Role of STAT3 in Juvenile Scleroderma
The Linda Lee Wells Research Grant
Sergei Atamas, M.D., Ph.D., Established
InvestigatorBaltimore Research and
Education Foundation
The Multifaceted Regulation of Lung Fibroblasts by IL-33Arterial Hypertension
Giuseppina Alessandra Farina, M.D.,
Ph.D., Boston University School of
Medicine
Innate Immune Modulation in SSc Fibroblasts
by Epstein-Barr (EBV) Infection
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2015 Research Grant Awards
The Marie A. Coyle Research Grant
David Lagares, Ph.D
Massachusetts General Hospital
Matrix Stiffness Gradients and Fibroblast Durotaxis in Scleroderma Fibrosis
Progression
Nezam Ibrahim Altorok, M.D.
University of Toledo
DNA Mehylation “Signature” in
Systemic Sclerosis Fibroblasts and
Endothelial Cells, and the Effect of
Oxidative Stress on DNA Methylation Profile
Helene Langevin, M.D., Harvard
Medical School/Brigham and
Women’s Hospital
Connective Tissue Mobility and
Fibroblast Dysfunction: A Potentially
Reversible Mechanism of Scleroderma
Pathology
The Mark Flapan Award
John Varga, M.D., Northwestern
University
Reduced Anti-aging Sirtuin in Ssc:
Disease Biomarker and Therapeutic
Target
The Marta Marx Fund for the Eradication of Scleroderma
Janet Elizabeth Pope, M.D., PhD, University of Western Ontario
Development of Systemic Sclerosis Subset Classification
The Linda Lee Wells Research
Grant
Stephen Mathai, M.D.
Johns Hopkins School of Medicine
Validation of the Tricuspid Annular
Plane Systolic Excursion as an
Outcome Measure in SclerodermaAssociated PAH
Elizabeth Volkmann, M.D., M.S.
UCLA
Long-Term Morbidity and Mortality
Outcomes in Systemic Sclerosis-Related
Interstitial Lung Disease
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2015 Multi-Center Collaborative
Research Grants (SCORE)
Kao Family Foundation Grant
Molecular Profiling in Early Diffuse Systemic Sclerosis
Collaborators: University of Texas Health Science Center at Houston, Northwestern University,
University of Utah, University of Michigan Ann Arbor
Principal Investigators: Shervin Assassi, M.D., M.S.; Monique Hinchcliff, M.D., M.S.; Tracy Frech, M.D., M.S.;
Dinesh Khanna, M.D., M.S.
Systemic sclerosis (SSc) is divided into diffuse and limited subtypes. Patients with diffuse involvement have more severe disease
and worse outcomes. Skin and lung involvements are two prominent SSc features, but their courses are highly variable. Some
patients have rapidly progressive disease, while others experience mild and stable involvement. The currently available clinical
information is not sufficient to predict the course of skin and lung involvement in diffuse SSc. Prospective Registry in Systemic
Sclerosis (PRESS) is an unprecedented collaboration among 10 specialized SSc centers in the U.S. to study patients with early
diffuse SSc for understanding the clinical and molecular features of this severe and active subtype of SSc. Novel molecular
techniques like microarrays and protein profiling are important tools for understanding the molecular basis of diseases. These
technologies can also be used to identify molecules that predict the course of disease and treatment response. The goal of
this proposal is to use these novel technologies in the PRESS cohort for developing better predictors of skin and lung disease
progression in diffuse SSc. Reliable molecular predictors can aid physicians in their clinical decisions and ultimately lead to
monitoring and treatment regimens that are tailored based on the individual patient’s needs.
Molecular Characterization of Multi-Organ Involvement in Patients With Systemic Sclerosis
Collaborators: Stanford School of Medicine, University of California San Francisco,
Dartmouth School of Medicine
Principal Investigators: Lorinda Chung, M.D., M.S.; Paul Wolters, M.D.; Michael Whitfield, Ph.D.;
Howard Chang, M.D., Ph.D.
Systemic sclerosis (SSc) is an autoimmune disease that leads to scarring in many organ systems including the skin, blood vessels,
gastrointestinal tract, and the lungs. Each patient is different with respect to clinical findings and disease severity. Several
molecules have been identified in single organ systems to be important in causing scar tissue to develop in that organ, but no
studies have looked at multiple organ systems to identify molecules that are important in causing scarring throughout the body.
Our group has developed cutting-edge technologies that will be used to identify common molecules in several organ systems
from the same SSc patient. Our study will lead to groundbreaking findings by identifying markers in the skin or blood that can
be used to monitor lung and gastrointestinal disease in patients with SSc. We will also identify molecules that can be targeted for
the development of new therapies to control and potentially cure the scarring affecting all organ systems in patients with SSc.
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Your Research Funding at Work: Meet Dr. Shervin Assassi, a dedicated scleroderma researcher.
Tell us a little about yourself and your beginnings in medicine.
I was born in Iran and left Iran at the age of 13. I completed my high school
education in a boarding school in Germany. I went to medical school in
Freiburg/Germany which is an old university town located in the middle of
the Black Forest. During my medical school education, I completed several
clinical rotations in the US. The most important one for my career was a
rheumatology rotation at the UCLA in Los Angeles. During this rotation,
Dr. Philip Clements was my supervisor. I still remember seeing my first-ever
scleroderma patient with him during this rotation. I completed my internal
medicine residency and rheumatology fellowship training at the University
of Texas – Houston. Subsequently, I joined the faculty at this University
and have been working in the UTHealth Scleroderma Program since 2005.
I live with my wife and three-year old son nearby the Texas Medical Center in Houston. We enjoy living in Houston because we
can do various outdoors activities throughout the year but also have the advantages of a typical urban life at the same time.
What piqued your interest in scleroderma research?
I had already become interested in scleroderma during my clinical training. This interest was further fostered through the
wonderful mentorship of Drs. Maureen Mayes, Frank Arnett, and Filemon Tan in the UTHealth Scleroderma Program. Each
of these scleroderma specialists played an important role in mentoring me in asking clinically–relevant research questions,
understanding the nuances of clinical manifestations, and finally in generating and analyzing robust molecular data in the field
of scleroderma. I became highly interested in the molecular basis of scleroderma because the disease is occurring truly at the
cross-road between inflammation and fibrosis. I was able to secure foundation and National Institutes of Health (NIH) support
to obtain further training in this area and complete several related research projects.
How did you first become introduced to the Scleroderma Foundation and how does it play a role in supporting your research?
I learned about the Scleroderma Foundation through my patients and other physicians who were involved in the activities of
the Foundation at the local and national levels. The Foundation is often the first resource for newly diagnosed patients for
accurate information about the disease and support. Drs. Frech (University of Utah), Hinchcliff (Northwestern University), Khanna
(Michigan University) and I were recently awarded the first Scleroderma Foundation Collaborative Research (SCORE) Grant. This
grant funds research in the PRESS cohort, which is an unprecedented collaboration among 11 specialized scleroderma centers
to understand the clinical and molecular features of early, diffuse scleroderma which is the more severe and active form of the
disease. This large grant provides the necessary resources for using advanced molecular techniques to generate robust data
and linking them to carefully collected clinical outcomes. The multi-center and collaborative nature of this project has enabled
us to enroll sufficient numbers of patients with early and active disease to conduct reliable research in this area.
Tell us a bit about your current research projects in scleroderma.
My research mainly focuses on linking the molecular data to clinical outcomes of scleroderma. We examine the blood and
skin tissue obtained from persons with scleroderma at the RNA and protein levels using sophisticated molecular techniques.
We and others have identified a prominent inflammatory signature in blood and in the skin tissue. Our current data indicates
that this inflammatory signature can help researchers not only in understanding the cause of disease but also aid clinicians in
choosing the appropriate treatment venue for our patients. These results need to be confirmed and further refined in larger
patient populations before they can be used in routine clinical practice. Currently, my research is mainly focused on validating
these findings in larger patient cohorts such as PRESS and Scleroderma Lung Study II.
How do think your research will benefit the patients in the long run?
The currently available clinical information is not sufficient to predict whether an individual patient will respond to treatment with
medications that dampen the immune response (immunosuppressive response). These medications are potentially associated
with adverse events and ideally should be administered only to patients that have a high likelihood of response to treatment.
We believe that the above mentioned inflammatory signatures in the blood and skin tissue can help clinicians in identifying the
S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T | 2 1
Our community
has a real chance
in transforming
the clinical care
of scleroderma
likely responders to immunosuppression. This can lead to more effective and focused
treatment strategies in scleroderma.
Investigating the inflammatory profile of affected organs in patients with early and active
disease can also lead to identification of new therapeutic targets that can be examined
in follow-up studies.
Have you met any inspirational scleroderma patients who have helped you to continue your
passion for your research?
During my fellowship, I was completing a project in families with two or more cases of
scleroderma. The number of enrolled families was limited and it was important that we
collect blood from all affected family members. There was a family where one sister and
one brother were affected by scleroderma. We had already enrolled the sister but had
capitalizing on
difficulties obtaining blood form her brother who lived out of state. One day, I received
a note from the brother stating: “If you want a blood sample from me, I request that
recent advances in
you get this within the next month or two, as I don’t expect to be around much beyond
this.” We worked out the logistical issues and were able to obtain his blood sample. He
basic and clinical
unfortunately passed away two months after our sample collection. His note hangs on
my office wall to this day because it reminds me of two important aspects of scleroderma
research areas.
research. It not only demonstrates the dire need for better diagnostic and therapeutic
strategies but also it shows the resilience and commitment of our patients and their
hopes that we as scleroderma researchers will discover more effective treatments and
eventually the cure of this potentially devastating disease in the future.
patients by
What is important for our community to know about clinical research vs. bench science?
I see both types of research as partners. We hear a lot about translational research which focuses on using basic science findings
for developing clinically effective diagnostic and therapeutic strategies. However, there will be nothing to “translate” into clinical
use if there is no scientifically robust basic science research in a given research area. On the other hand, the most sophisticated
basic science research will not lead to tangible changes in clinical care if translational or clinical researchers do not examine
the implications of basic science findings in real clinical settings.
Do you see an increase in scleroderma research? What can we do as a community to ensure scleroderma research continues to grow?
The unprecedented advances in molecular techniques and the establishment of multicenter cohorts like PRESS can transform
scleroderma research in the coming years. The main hurdle is the availability of funding for basic and clinical research. The NIH
funding has substantially decreased over the last two decades which makes the availability of research support from other
sources like the Scleroderma Foundation and Department of Defense crucial. The good news is that the research support from
the Foundation has increased in recent years. Furthermore, the Department of Defense has re-enlisted scleroderma as one of
their focus areas. I don’t believe this would have been possible without the far-reaching advocacy efforts of the Foundation.
Another positive trend is that several pharmaceutical companies are investing resources for developing and testing novel
therapeutic options in scleroderma.
What are your future hopes for your research and scleroderma research in general?
My hope is that the research conducted by our community will lead to more effective treatment strategies especially for fibrotic
features of scleroderma in the near future. This goal can be achieved by two venues: 1) Development of medications that more
effectively block the molecular changes leading to fibrosis; 2) Accurate identification of patient subgroups that are more likely
to benefit from a certain therapeutic approach.
Our community has a real chance in transforming the clinical care of scleroderma patients by capitalizing on recent advances in
basic and clinical research areas. The scleroderma researchers, consisting of a collaborative and dedicated group of individuals
with complementary skills, can enable this transformation. The main hurdle for reaching this goal is funding. The decreasing
NIH funding can discourage researchers from pursuing promising research venues. Therefore, research support from the Scleroderma Foundation is absolutely critical for discovering more effective treatments and an eventual cure.
2 2 | S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T
Advocacy
Your Voice Matters! The Foundation’s commitment to both local and
national advocacy initiatives continued
to move forward.
Triumphs on Capitol Hill
Dale P. Dirks, president; and Dane R. Christiansen, vice president,
Health and Medicine Counsel of Washington
This year, grassroots advocates for the scleroderma community
demonstrated just how powerful their collected voices can
be. Thousands of affected individuals from across the country
answered the call to engage their legislators on Capitol Hill and
ask Congress to re-list scleroderma as a condition eligible for
study through medical research activities led by the Department of Defense (DOD).
Scleroderma researchers at academic medical centers throughout
the country already receive millions of dollars each year in
federal funding through the research portfolio coordinated
by the National Institutes of Health (NIH), another area where
advocates have worked to advance and protect funding. Scleroderma advocates sought to supplement those efforts by asking
their elected representatives once again to list scleroderma as
a condition eligible for study through the DOD Peer-Reviewed
Medical Research Program. While the appropriations process
is not yet completed and finalized, Congress has responded
to the community’s outreach with substantive action.
The House of Representatives added important language
asking the DOD to study potential links between scleroderma
and cancer. The Senate also took action and listed scleroderma
as a condition eligible for DOD research through the PeerReviewed Medical Research Program (the community’s exact
request). Further, lawmakers recommend increasing funding
for the DOD Peer-Reviewed Medical Research program from
$200 million to $250 million. If enacted into law at the end of
the year, these new opportunities would give scleroderma
researchers access to significant new streams of funding, which
could establish and accelerate research projects.
It is also important to note that in response to requests from
grassroots advocates, legislators have recommended increasing
the funding of the scleroderma research portfolio by $600 million.
The community has certainly shown how individual efforts
can be multiplied into a meaningful progress, but challenges
remain. Most notably, a debate is emerging on Capitol Hill
around access to innovative treatment options for individuals
with chronic and/or costly conditions. Also, at this point in the
process, the aforementioned new funding opportunities are
simply proposed, more advocacy will need to take place to
ensure they are enacted.
If one thing is for certain, it’s that Congress has shown a willingness to listen to the scleroderma community’s concerns, so
please consider educating your legislators on ways they can
be of service.
Members of the Foundation’s
Advocacy Committee, Rosemary Markoff and Suzy Ballantyne meet with a member
of Senator Kirsten Gillibrand’s
(D-NY) staff.
S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T | 2 3
2 4 | S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T
More than $153,000 was raised at the
“Laughing Out Loud for Scleroderma” event
to benefit the Scleroderma Foundation’s
Southeast Florida Chapter. The fundraiser
featured acclaimed comedian Dom Irrera
and actor Jason Alexander. Scleroderma
supporters packed The Improv at the
Seminole Hard Rock Casino in Hollywood,
Florida.
S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T | 2 5
Your Support Matters
With great need comes great opportunity. Thank you for your steadfast support. It makes our
work possible.
The work of the Foundation would not be possible without our farsighted donors like you. Your philanthropy allows the Foundation to create programs that affect the lives of those living with scleroderma.
If the purpose of an annual report is to provide an overall review of the financial health of an organization and its accomplishments,
then it is fitting that significant space is given to calling attention to those who make everything that the Scleroderma Foundation
does possible – our members, donors, sponsors and friends.
From individual gifts to corporate sponsorships, from major chapter events to national initiatives, FY 2014 was a year rich in
philanthropic support. It is very heartening to see that many are willing to invest in the work we do to fight scleroderma. Without
our donors, sponsors and members, the work of the Scleroderma Foundation could not continue, nor could we have grown into
the world’s largest nonprofit organization dedicated to serving the needs of the scleroderma community.
The Foundation continues to actively support vital initiatives to identify potential new treatments and strategies to help people
living with scleroderma better manage the symptoms of the disease and improve their health.
Adding more hope and longevity to the lives of people living with scleroderma was the united mission of thousands who came
together to help the Scleroderma Foundation work towards its ultimate goal: finding a cure. Families affected by the disease,
dedicated volunteers, corporate sponsors and other friends contributed to and participated in hundreds of events nationwide,
raising millions of dollars to help support scleroderma research, education, care and other Foundation programs.
Support comes to the Foundation in many shapes and sizes: from a walk of 1,000 to a marathon run, from a child’s birthday
party to an elegant gala. Whether it’s a donation of water for an event, a memorial gift, or corporate grant, workplace giving
donation, direct mail response, or membership, each and every donation helps the Foundation benefit millions of people with
scleroderma for years to come.
Although the efforts made by so many to support the Foundation are too numerous to mention, here are some philanthropic
highlights of FY 2014:
Chapter Support of National Initiatives and Programs
The 22 chapters of the Scleroderma Foundation significantly increased their financial support of national initiatives and
programs, thus advancing their synergistic partnership with the national office, which is critical to advancing the mission of
the Foundation at the local level. As in years past, the chapters of the Foundation generously supported scleroderma research
collectively provided more than $300,000 through voluntary research contributions. These contributions come from the chapters’
budgetary surpluses or cash reserves. That level of support is a true testament to the common hope that everyone within the
Foundation shares: the hope of a cure.
“Stepping Out to Cure Scleroderma”
The “Stepping Out to Cure Scleroderma” walkathon, the Foundation’s largest fundraising event, continued to expand its reach,
generating an outstanding $1.3 million. Moved by the tremendous difference the Foundation is making in the lives of those
with the disease, thousands of walkers and runners participated at 54 sites across the country. Each year, these events provide a
way for supporters of the Scleroderma Foundation to come together and help advocate for a great cause. Beyond their financial
success, “Stepping Out to Cure Scleroderma” events raise an inestimable amount of awareness and generate significant media
coverage in cities small and large throughout the country.
2 6 | S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T
Beta Sigma Phi
For 33 years, the sisters of Beta Sigma Phi have supported the work and the mission of the Scleroderma Foundation. Since
1980, the California Councils and the Beta Sigma Phi international endowment have raised awareness and contributed over a
half million dollars to support the Scleroderma Foundation. This year, the Beta Sigma Phi philanthropic chairs donated close to
$50,000 for the various California councils and their national organization.
Collaborative Efforts
Long-time corporate friendships and valuable new collaborations were instrumental in supporting the work and mission of
the Foundation in FY 2014.
For more than eight years, Actelion Pharmaceuticals US has supported the Scleroderma Foundation cause and community
through its national sponsorship. Through this important partnership, the Foundation received an unrestricted educational grant
that provided significant underwriting for key programs and services at the national and chapter levels. Among the programs
that benefited from the support of Actelion in FY 2014 were:
The National Patient Education Conference in Atlanta; the Chapter and Support Group Leadership Conference, also in Atlanta;
“Stepping Out to Cure Scleroderma” walk-a-thons; over 70 chapter patient educational events; and national patient support
activities, including the Foundation’s website, patient information packs, new patient education literature and toll-free Helpline.
The Scleroderma Foundation leadership is grateful to Actelion for its continued and significant support of the work and mission
of the organization. Its corporate philanthropy has had a profoundly positive impact on the Foundation’s ability to grow and
improve services to the scleroderma community.
Each gift, no matter the size, is important. Every donor plays a critical role in the fight to eliminate this disease
and support those whose lives have been affected by scleroderma until a cure is found. On the following pages,
you will find a list of donors who supported the Foundation’s work in 2014 with cumulative gifts of $1,000 and
greater. To those listed, and to those not listed (to conserve both financial and natural resources), we extend
our deepest gratitude for your generosity and gracious support.
A Special Thank you to our FY 2014 Corporate Sponsors
S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T | 2 7
In 2014, for the sixth year in a row, Charity Navigator, the independent organization that rates the financial
health and efficiency of charities, gave its top rating of four stars to the Scleroderma Foundation. This “exceptional” rating indicates
that the Scleroderma
Foundation “consistently
executes its mission in a
fiscally responsible way,
and outperforms most
other charities in America.”
Charity Navigator’s rating system examines two
broad areas of a charity’s
financial health: 1) how
responsibly it functions
day to day and 2) how well positioned it is to sustain its programs over time. According to Charity Navigator, this four-star designation reflects the commitment of the Scleroderma Foundation’s leadership to
strengthening its overall operation, effectiveness and cost reduction practices.
On November 25th, Queen Latifah honored her mother, Rita Owens, on a special episode of her daytime talk show. She and
her family paid an emotional tribute to their hero Earlier this year, the TV host and actress opened up to “People” magazine
about her mother’s struggle with scleroderma and pulmonary arterial hypertension (PAH).
The Foundation is grateful that Queen Latifah has shared information about the Scleroderma Foundation and its resources
with her audience. Because of her efforts, we have been able to reach countless new individuals in the scleroderma community
and beyond, and create immeasurable awareness about the disease in the public eye. We recognized both Queen Latifah
and Rita Owens with our “Messenger of Hope” award at this year’s annual conference in Anaheim, California.
Reprinted with
permission from
People Magazine
2 8 | S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T
Thank You.
We are committed to excellence in each aspect of our mission of support, education and research, and we thank you for collaborating
with us on this important work. Through our partnerships with you, we touch lives to bring hope and compassion. We also provide
much needed research funding to bring us a step closer to a cure. Together, we make a difference in the scleroderma community
and beyond.
$ 50,000+
Actelion Pharmaceuticals US, Inc.
Anonymous Fund of Triangle Community
Foundation, Inc.
Bayer Healthcare
Combined Federal Campaign
Estate of John H. Craig
Gilead Sciences, Inc.
Estate of Virginia M. Guarino
Kao Family Foundation
New England Golf Classic Anonymous Donors
$25,000 - $49,000
Mr. and Mrs. George and Lisa Etheridge, Jr.
Bill and Joi Goodbread
Paula and Roy May
Nancy P. Shea Trust
Southern Wine and Spirits of America, Inc.
United Therapeutics
Sol and Tina Waxman Foundation
$10,000 - $24,999
Stacy Barron
Michael Batz
Bethpage Federal Credit Union
Estate of Fran Batz
Genentech Inc.
Estate of Glendon L. Griffith
Hummer Winblad Venture Partners
Charles Lawrence
Barbara Musco
Estate of George Pulos
Motorola Symbol Tech
The Scott Family
Michael Sheehan Trust
The Ladd J. and Jarmilla R. Vosahlik Trust
Kevin Weiss
$5000 - $9999
Anonymous (3)
Danielle Asip
Beta Sigma Phi Endowment Fund
Beta Sigma Phi/Northern CA Council
Marlene Calverley
Joseph P. Camerino, Ph.D.
Antonietta Chiocchi
Community Foundation for Southeast Michigan
Constellation Brands, U.S. Operations
Lindsay Cowan
Yvonne Crandall
Crane Foundation
Dr. and Mrs. James and Pam Duke
Valentine Fenti
Denise Gesuale
Peter and Carol Goldman
Patricia P. Greenhood
Sima Ingberman
Lynne and Robert Keller
Peter Kellner
Marc Krieger
Saul and Eleanor Lerner Foundation
Estate of Joan Lindeman
The Reva and David Logan Foundation
Cos Mallozzi and Ronni Shulman
Bill and Cyndy Martin
Food 4 Less
Dale and Ayako Okuno
Sina Passarelli
Estate of Ann Rogers
Schwager, Lyn
Mr. Steven J. Seidemann
John and Patricia Tishler
Ted Valpey, Jr.
Kristopher Williams
$1000 - $4999
Anonymous (10)
Donna L. Abbruzzese
Advantage Group
The Ahonen Family
Ken Aldridge
Roni Alexander
All Good Pest Control
Clarence W. Allen, Jr.
Allstate Foundation
Alvarez Educational Foundation, Inc.
M.J. Amaro - Emerson - Closetmaid
American Autoimmune Related Diseases
Association
Leigh Ann Anderson
Ann Grovenstein-Campbell
Antoinette Aquino
Associate Engineering Corp
Sergei Atamas, M.D.
Nelson P. Ball
Suzy Ballantyne
Jeffrey Barath
Greg and Mary Barnes
Susan Barney
Edward Barsocchi
Margaret and Reginald M. Bayley
Joe and Nelda Beaud
Charles and Glenna Beckman and Family
Richard A. Bell, M.D.
June Bender
The Benevity Community Impact Fund
Craig, Melissa and Dennis Benner
Fran Bernstein
Bern Bertsche
Cyndy and Craig Besselievre
Beta Sigma Phi/ Camino Real California Council
Beta Sigma Phi/ Mission California Council
Beta Sigma Phi/ Pacific California Council
Beta Sigma Phi/Central CA Council
Beta Sigma Phi/Far Northern CA Council
Beta Sigma Phi/Orange Coast California Council
Beta Sigma Phi/Southern CA Council
Bobby Bindert
Jim and Beverly Bird
Judith Birnbaum
Christopher Birosak
Bill and Mary Blades
Alan and Desiree Bleam
BNY Mellon Community Partnership
Lydia Boras
Theresa Borg
Hannah Bose
Paul Boykas
Joanne F. and Robert Brady
Catherine Bramhall
Sheila Brayman Borgese
Katherine Brewster
Michael and Elaine Lasnik Broida
Carla Brown
Allan Brownie
Bruce and Judith Brunson
Gabby Burns
Erin Calev
Olga Casarella
S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T | 2 9
Murtaza Cassoobhoy, M.D.
Linda and Richard Cautero
Joel Cherman
The James D. and Veronica E. Chesterton
Family Foundation
Chi Omega Sorority
Paul Childs
Vernon Childs
Janet Chinelli
Marty Ciszon
Zachary L Ciszon
Mr. and Mrs. Joseph Clancy
Arissa Clark
Mr. and Mrs. Charles Clarke
Philip J. Clements, M.D.
Laura Cloke
Leslie and Jules Cogan
Harvey Condon
Harvey Condon
Christopher J Conroy
Mary Contadino
Peter and Emajean Cook Foundaton
Melissa Coppola
Scott Cornell
Rosie Cortese
James M. Costello
County of Los Angeles
Covey Gant Foundation
The Coville Triest Family Foundation
Preston E. Cowie
Marie A. Coyle
Russ Cranswick
Alvin and Angela Crowl
Donald J. Curtis
Daniell Family Foundation
Daniels Family Foundation
Amanda Davi
Ken Davidson
Ms. Geneva G Davis
Armand De Palo
Amelia B. DeGeiso
Mrs. Amelia B. DeGeiso
Robert and Eleanor Demple Family Foundation
William and Katharine Dennis
Joann DeRose
Matthew Devins
Mr. Joseph J. DeVirgilio, Jr.
John and Mary Deyst
Cora DiFiore
John T. Dillon
John K. Donohue
Brian Downey
Dr. Gary Levengood, Sports Medicine South
Robert M. and Nancy Dunn
Cece and Denis Dwyer
Mr. and Mrs. Robert J. Dwyer
Mr. and Mrs. Steven Dyas
Mark R. Eaker, M.D.
Susan Ehrlich
Thea Ellesin-Janus
Mr. and Mrs. Edward A. Elliott
Stephen and Michelle Elrod
Robert Englebach
Mr. Ted English
Enterprise Holdings Foundation
Annette M. Epps
Stan and Denise Eskridge
James Evans
Barbara Everett
Robin Fagan
Robert Fairfield
Sophia Falusi
Carol Feghali-Bostwick
Christina Ferrari
Fidelity Charitable Gift Fund
Larry Field
Alison Fischer
Crystal Fisher
Robert “Harper” Fraley
Mr. and Mrs. William C. Frederic
Melinda C. Frey
Monte Friedkin
Nneka Fritz
Fusco, Brandenstein and Rada P.C.
Linda Garard
Lisa M. Gearen
Pat and Pete Gerardi
Glamorise Foundations, Inc.
Plasma Services Group
Sara and Andrew Gledhill
3 0 | S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T
Debbie Goetz
Felice Gold
Justin and Sylvern Goldman Foundation
Eric Goldstein
Allen Gorrelick
Eric Gosch
George Gottesman
Clare Gregory
Harriet H. Gutknecht
Kim Hall
Cheryl Hanlon-Minara
Harbour Mechanical Corp.
Mr. and Mrs. Robert Hardman
Joe Harrison
Jean Hartman
Patrick Hayes
Hayman Studio Commercial Photography
Heenan Agency, Inc.
Heenan Storage, LLC
Mr. and Mrs. John Heilala
Helen Kay Charitable Trust
Ms. Robin Horn
Hospital for Special Surgery
Houghton, Whitted and Weaver, PC, LLO
Russell Houston
Betty C. Hughes
Anna Hull
IBM Employees Service Center
James Imper
DMH Ingredients
Steven Irlbeck
Fred Jackson
Linda Jackson
Katayun Jaffari
Wendi Jamison
Wendell N. Jarrard Foundation, Inc.
Jersey Strong Foundation Inc.
The Jersey Strong Foundation
Joe and Cindy Goldberg Family Foundation
Joe and Kay Calvanese Foundation
Rosa Johnson
Jessica L Jones
Lee Roy Jones
Sally and William Kahn
Estate of Natalie F. Kane
Cheryl C. Katcher
Stanley Kaufman
Daniel Keating
Brian Kim
Eileen Kimbell-Meaney
Emily King
Monte and Janice Klein
Joshua M. Korn
John and Patricia Koza
KPMG Community Giving Campaign
Nancy Krudys
Roy Kylander, MHUSA
Mr. and Mrs. Herbert A. Lampert
Land Baron Abstract Company, Inc.
David and Lois Leeds
Dr. and Mrs. George Leopold
Linda Levine
Mr. Mark Levine
Fred and Julie Lienemann
Lighthouse Christian School
Mark Lindstrom
Filomena LoRusso
John Loughnane
William Ludel
Lyda Hill
Sandee and Michael Maas
Jeff Mace
Elizabeth MacLean
Dr. Thomas and Lan Mahon
Betty Mallon
Jane M. Mancia
Marathon Oil Company Matching Gifts
Lawrence and Nancy Marcus
Greg Marion
Rosemary Markoff
Wayne L. Martin
Robert and Kira Maton
Mr. and Mrs. Robert May
The June and Cecil McDole Charitable Fund
Mike McIlhon
John McNamara
Lisa Meaney
Aida Mei
Edward P. Meissner
Mercedes Benz USA
Meritor, Inc
Metro Bank
Justine M. Metz Fund
Lois B. Miller
Phyllis Miller
Gordon H. and Karen M. Millner Family Foundation
Connie Jean Monroe
Karen Morano
The Morningstar Foundation
Bank of America
Michelle Morrrison
Morton Revocable Living Trust
Kevin Murphy
Mutual Electric Company
Jack and Marianne Napoli
Maria Narvaez
National Christian Foundation
National Philanthropic Trust
NBT Bancorp
Rose Neahr
Richard and Pat Nelson
Tameka Nelson
Network For Good
New Jersey Labs
New York State AFL-CIO
Newburgh Brewing Co
Newsholme Financial Services, Inc.
John Niemi
Nike Inc. And Affiliates
Christine Nims
Dean and Marcia Nims
Jan Nitti
Elizabeth Nolan
Sister Mary Rose Noonan
John R. Nooncaster
C. Neil and Carolyn S. Norgen Foundation
Robert Norris Charitable Foundation
Tom Northrup
Ilene, Ava and Jay Nusblatt
Nuveen Investments
Mayra Oberto-Medina
Alice Okuno
Randall Oliver, Smart and Final
Roy Olson
Timothy M. Osborn
Dianne Pandolfi
Michelle Pandolfi
David B. Parker
Parkway South Junior Patriots Basketball II
Thomas A. Pawloski
Penn Medicine
Penske Corporation
Jackie and Paul Pepperman
Tina and Joseph Perri
Chris and Melinda Pettit
Jennifer Phillips
Susan Pierce
PJM Interconnection
Noreen and Albert Platten
Frank Postma
Lori Presley
Progressive Casualty Insurance Co.
Michael Purcell
James Purvis
Quattrone Foundation
Annette Rahn
Vandana Rao
H. Lewis Rapaport
Rosemary W. Reeves
Relax The Back Corporation
Render Family Foundation
Edith Diane Reynolds
Theresa Rice
Riggs Oil Company
Jane Risolo
Robertas Tuesday Girlfriends
Frank H. Robinson
Michael Rockoff
S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T | 3 1
Paul Rom
Rosenson Family Foundation
Marguerite Rosi
Bethany S. Ross
The Rotary Foundation
John and Janis Ruan
Lita Rudy
George and Sharon Runner
Freda B. Runyon Foundation
Norton Sarnoff
Pam S. and Sal Saunders
Bill Savage
Glen Schneider
Robert P. Schneider
Nick Schulte
Karen C. Schumacher
Schwab Charitable Fund
Scleroderma and Raynauds Treatment Ctr of
the North Shore LIJ Health System
Sharon and Scott Seiler
Dawn Selg
Dan and Margie Sena, Daniels Café
Ellen Haug Shannon
Betzi Sheff
Michael T. Sheehan Family Trust
Marilyn Sibley
Sidney and Beatrice Albert Foundation
Theodore L. Singleton
James W. Skovron
Robert Slappey
Ann M. Smith
Nancy Sokil
Michael Sperling, Rok Acquisitions, LLC
Sassy Steals
Nancy Steinhaus
Rachel Stempel
Steve Stitt
Sylvia Stouch
Janet Stucky
Gary Sylvan
Taco Bell/City Different Enterprises, Inc.
Ross Howard Taff
Kym Taylor
The Associated Jewish Charities of Baltimore
Bill Thompson
William Thompson
Ms. Karen J. Thorpe
Thrifty Car Sales
Toolan Family Foundation
Jeffrey Toromoreno
Melany K. Tower
Linda and Robert Truman
Turan Family Foundation
Sherry Tyler
Verizon Foundation
Virtual Parrot Head Club
Vision Graphics
Tom Votel
Pamela Walders
Walgreens
Michael Walsh
Jill Welch
Westroads Medical Group
Westroads Rheumatology Associates, P.C.
Martha Wiebers
William Blair and Co
Barbara Gene Winthrop
Paul Woldar
Bob R. Wollenburg
The Women’s Club
The Women’s Group
Thomas and Tammy Wright
Andrea Youndt
Young’s Market Co
Lorriann Zappola
We gratefully acknowledge our generous
donors and thank you for your support.
Please accept our apology if we have made
any errors or omissions with your name
or gift. If your listing requires correction,
please contact Tracey O. Sperry at
(800) 722-4673 or via email
[email protected].
3 2 | S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T
FY 2014-2015 Financials
Scleroderma Foundation Fiscal Year Ended June 30, 2015
TemporarilyPermanently 2015
UnrestrictedRestrictedRestricted Total
Revenue and Other Support
Contributions
1,897,898 1,297,758 0
3,195,656
Special Events, net
821,425 0
0
821,425
Contributions from Affiliates
345,717 0
0
345,717
0
235,684 0
235,684
Interest and Dividends
132,235 44,078 0
176,313
Net Realized Gains on Investments
149,923 25,692 0
175,615
(130,287)
(19,997)
0
(150,284)
113,091 0
0
113,091
Registration Fees
95,672 0
0
95,672
Bequests
61,635 0
0
61,635
2,000 0
0
2,000
1,316,409 (1,316,409)
0
0
4,805,718
266,806
0
5,072,524
Education and Support
2,723,769 0
0
2,723,769
Research 2,185,073 0
0
2,185,073
4,908,842
0
0
4,908,842
General and Administrative
491,576 0
0
491,576
Fundraising
226,802 0
0
226,802
Total Supporting Services
718,378
0
0
718,378
Voluntary Research Contributions
Net Unrealized Losses on Investments
Returned Grant Awards
Other Income
Net Assets Released from Restrictions
Total Revenue and Other Support
Expenses - Program Services:
Total Program Services
Expenses - Supporting Services:
Total Expenses
5,627,22000
5,627,220
Increase (Decrease) in Net Assets
(821,502)
266,806 0
(554,696)
Net Assets at Beginning of Year
9,119,805 310,489 1,542,375 10,972,669
Net Assets at End of Year
8,298,303 577,295 1,542,375 10,417,973
S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T | 3 3
Revenue
¢ Contributions
5%
4% 3% 2%
7%
¢ Special Events, net
¢ Affiliate Dues
63%
16%
¢ Voluntary Research
¢ Investment Income
¢ Other Income
9%
4%
Expenses
48%
¢ Education and Support
¢ Research
¢ General and Administrative
¢ Fundraising
39%
3 4 | S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T
Chapters by State
The work of the Scleroderma Foundation could not reach the people who need our
assistance most without the tireless efforts of our volunteers and staff in chapters
across the country. Please visit www.scleroderma.org for specific information on
each of our chapters.
California
Northern California Chapter
Southern California Chapter
Colorado
Colorado Rocky Mountain Chapter
Connecticut
Tri-State Chapter
Delaware
Delaware Valley Chapter
District of Columbia
Greater Washington, D.C. Chapter
Georgia
Georgia Chapter
Florida
Southeast Florida Chapter
Illinois
Greater Chicago Chapter
Indiana
Greater Chicago Chapter
Iowa
Heartland Chapter
Maine
New England Chapter
Maryland
Greater Washington, D.C. Chapter
Massachusetts
New England Chapter
Michigan
Michigan Chapter
Minnesota
Minnesota Chapter
Tennessee
Tennessee Chapter
Missouri
Missouri Chapter
Texas
Texas Bluebonnet Chapter
Nebraska
Heartland Chapter
Vermont
New England Chapter
New Hampshire
New England Chapter
Virginia
Greater Washington, D.C. Chapter
New Jersey
Northern New Jersey – Tri-State Chapter
Southern New Jersey – Delaware Valley
Chapter
Washington
Washington Evergreen Chapter
New York
Tri-State Chapter
Ohio
Ohio Chapter
Oklahoma
Oklahoma Chapter
Oregon
Oregon Chapter
Pennsylvania
Eastern Pennsylvania
Delaware Valley Chapter
Rhode Island
New England Chapter
South Carolina
South Carolina Chapter
South Dakota
Heartland Chapter
Wisconsin
Greater Chicago Chapter
S C L E R O D E R M A F O U N D AT I O N A N N U A L R E P O R T | 3 5
National Leadership
Board of Directors
National Staff
Joseph Camerino, Ph.D., Chair
Carol Feghali-Bostwick, Ph.D., Vice Chair
Mary Blades
Bruce Cowan
James Evans
Katayun Jaffari
Lee Roy Jones
Robert Kacick
Cos Mallozzi
Greg Marion
Bill Martin
Robert Slappey
Robert J. Riggs
Chief Executive Officer
Medical and Scientific
Advisory Board
o
Steering Committee
John Varga, M.D., Chair
Maureen D. Mayes, M.D.
Richard Silver, M.D.
Virginia Steen, M.D.
Members
Carol Black, M.D.
Lorinda Chung, M.D. Philip Clements, M.D.
Aryeh Fischer, M.D. Tracy Frech, M.D. Daniel Furst, M.D.
Jessica Gordon, M.D. Laura Hummers, M.D. Sergio Jimenez, M.D.
Dinesh Khanna, M.D., M.S.
Janet Pope, M.D. Robert F. Spiera, M.D.
Arnold Postlethwaite, M.D.
Members Emeriti
Frank Arnett, M.D.
Michael Ellman, M.D.
Thomas Medsger, Jr., M.D.
Frederick Wigley, M.D.
Ryan Burrill
Programs and Services Coordinator
Kerri A. Connolly
Director of Programs and Services
Shenna Gianetta
Executive Assistant
Laura Koumarianos
Senior Accounting Manager
David Murad
National Director of Chapter Relations
Linda Norris
Database Administrator
Jillian Scola
Communications Manager
Irina Shuruyeva
Accounting Assistant
Tracey O. Sperry
Director of Development and Research
Maureen Zuluaga
Senior Database Administrator
Scleroderma Foundation
300 Rosewood Drive, Suite 105
Danvers, MA 01923
Tel: 800-722-HOPE
www.scleroderma.org
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www.facebook.com/sclerodermaUS