2010 SCLERODERMA FOUNDATION ANNUAL REPORT

2010
SCLERODERMA FOUNDATION ANNUAL REPORT
Support, Education, and Research
A Message from the Board Chair, Joseph P. Camerino, Ph.D.
Our Gateway to Hope
The Scleroderma Foundation is dedicated to improving the lives of all people impacted
by scleroderma. Our three-fold mission of support, education and research directly affects
patients, family members and caregivers.
Each day, we are a committed community that hopes to find the cure through
revolutionary new ideas. Whether it is through our nationwide patient support
programs, educational events or our annual research funding program, the Foundation
works determinedly to ensure a brighter and healthier future for all those affected by
scleroderma.
Along with the help of our network of 23 chapters and 168 support groups, we continue
to improve scleroderma awareness, education, advocacy and research. Throughout 2010,
the Foundation expanded its patient programs and online services and funded more than
$1 million in research grants. By focusing on the needs and concerns of those living with
the disease, we provide new resources and materials to those impacted by the disease.
In 2010, the Foundation enhanced its programs and services by further solidifying
relationships with other nonprofits, donors and volunteers. The Foundation collaborated
Photo shows
representatives
from the two
original
with Actelion Pharmaceuticals US, Inc. to develop
a “Healthcare
Management
Binder.”
organizations
at
the
merger
signing
in
late
1997.
This tool is a useful resource for patients and caregivers to organize personal health
information. With the continued support from our corporate partners, including Actelion
Pharmaceuticals US, Gilead Sciences, PfizertEXT
and hERE.
United Therapeutics, we continued to
develop and improve our outreach efforts and services to individuals throughout the
country.
The Scleroderma Foundation made strides in local and national advocacy efforts to
increase awareness of the disease. The Foundation’s Advocacy committee, chaired by
Southern California’s Executive Director, Brian Ross Adams, and many volunteer advocates
worked diligently to garner support of the “Scleroderma Research and Awareness Act,”
bipartisan legislation introduced in Congress in 2009 to increase research funding. In
September 2010, the U.S. House of Representatives unanimously passed the bill. Even
though it did not pass the Senate, our advocates are determined to promote scleroderma
funding and awareness among our lawmakers on Capitol Hill.
The Scleroderma Foundation is a highly efficient and fiscally responsible organization.
Thanks to the unwavering support of the scleroderma community and the successful
strategic management of funds, the Foundation completed its fifth consecutive year with a
modest budget surplus.
We continue to be a leader in scleroderma awareness, education and research funding.
The organization plays a vital role to find a cure. I encourage you to read this Annual
Report and learn more about the breakthroughs and contributions made on behalf of the
Foundation, and the dedicated individuals, families and medical professionals that make
such accomplishments and advancements possible.
Sincerely,
Joseph P. Camerino, Ph.D.
Chair, Board of Directors
Only Those Who See the Invisible Can Do the Impossible!
Our Commitment to Those Affected by Scleroderma
Mission
Since 1998, the Scleroderma Foundation has
dedicated itself to serving the needs of those
affected by scleroderma. Through its three-fold
mission of support, education and research,
the organization has grown to encompass a
nationwide network of 23 chapters and 168
support groups that host a variety of programs
and services for individuals living with
scleroderma and their families. For more than
a decade, the Scleroderma Foundation has
carried forth its mission to serve the needs of
those affected by scleroderma.
better understanding of scleroderma and the
tools available to help manage the disease.
Each year, the Foundation’s chapters and
support groups host a number of patient
education events, fundraisers, galas, walk-athons and seminars to raise awareness of the
disease. The Foundation’s National Patient
Education Conference serves as an annual
retreat for scleroderma community members,
researchers, physicians and others to collect
new information about the disease. The event
also offers a place for individuals affected by
scleroderma to connect
Through the Foundation, with others who share
SUPPORT
similar experiences.
The Foundation
people find a safe and
Publications, such
recognizes the need
as the “Scleroderma
welcoming environment
to connect patients
Voice” and the weekly
with one another, and to share stories,
online eLetter, keep
works with chapters
information, and most of members informed
and local support
about all the latest
groups to facilitate
all, inspiration and hope. scleroderma-related
meetings, events and
news.
patient education seminars to bring together
RESEARCH
individuals living with the disease. Within
In addition to fostering support and education,
these various chapter and support group
the Foundation is also a leading provider
settings, people find a safe and welcoming
of scleroderma research funding. As its
environment to share stories, information,
single-largest budgeted annual expense, the
and most of all, inspiration and hope. The
Foundation makes available an average of $1
Foundation also offers a toll-free support line
million each year for scleroderma research
(1-800-722-HOPE) with a dedicated staff
to new and established researchers across
to answer telephone inquiries, and provide
the globe. Throughout the past decade,
patients and their families with informative
the Foundation’s research program has
materials and resources.
provided vital “seed” funding that has allowed
investigators to advance and receive even
EDUCATION
greater amounts of funding from federal
An integral aspect of the Foundation’s mission organizations such as the National
involves providing education to patients,
Institutes of Health and other entities.
family members and the public to foster a
OUR HISTORY
The Scleroderma Foundation, Inc., was established
on January 1, 1998, through a merger between the
West coast-based United Scleroderma Foundation
and the East coast-based Scleroderma Federation,
each of which can trace their founding dates back to
the early 1970s. The two organizations shared similar
missions, goals, and programs, and partnered to fund
medical research grants through a joint peer-review
process modeled after those of the National Institutes
of Health.
Today, the Scleroderma Foundation has grown in
size and scope to include a network of 23 chapters
and 168 support groups throughout the United States.
Following a three-fold mission of support, education,
and research, the Foundation is guided by a dedicated
Board of Directors and employs a professional staff to
manage daily operations.
An active Medical Advisory Board, comprised of distinguished researchers and clinicians in scleroderma
and related fields, assists the Foundation in providing
research and medical related information to patients
and other interested parties. An independent Peer
Review Committee, also comprised of leading medical experts, reviews, evaluates, and scores research
grant applications to ensure that the Foundation funds
are used to support the most promising research initiatives taking place across the country.
Scleroderma Foundation 2010 Annual Report
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Serving Those In Need
When dealing with an unpredictable
and often deleterious disease such
as scleroderma, support is essential
to survival - support like those who
attended the 2010 National Patient
Education Conference received.
Support
The Scleroderma Foundation provides vital
SUPPORT to all those affected by scleroderma
through programs such as peer counseling,
physician referrals and educational
information. In 2010, the demand for our
support services increased through calls
to the Foundation’s toll-free helpline and
requests for information about the disease.
The Scleroderma Foundation strives to
provide quality information and resources to
individuals for support.
The Foundation’s quarterly magazine,
the “Scleroderma Voice,” provides news and
information to patients, families, caregivers
and health care professionals. The 2010 issues
featured updates on the latest research, clinical
trials and treatments, as well as articles
authored by doctors and other health care
professionals who specialize in scleroderma
and related diseases. The “Scleroderma Voice”
also provides practical tips to help patients
cope, answers to medical questions from
health care professionals and patient stories
that highlight how people are living with the
disease. The publication also serves as an
important tool to inform Foundation members
about fundraising efforts, public awareness
campaigns and advocacy on Capitol Hill to
help increase federal funding of sclerodermaspecific research through the “Scleroderma
Awareness and Research Act.”
It is essential that the scleroderma
community have access to an informed and
knowledgeable staff to help support the
health and well-being of people living with
scleroderma and their family or friends.
Throughout 2010, the Foundation’s support
staff received nearly 13,000 emails (sfinfo@
scleroderma.org) and telephone inquiries
through the toll-free helpline (1-800-722HOPE) from patients, family members,
caregivers and medical professionals who
requested information or other resources.
More than 700 scleroderma information
packets also were mailed to newly-diagnosed
patients eager for support and information.
The Foundation also offers a variety of
printed literature to accommodate the needs
of patients and the greater scleroderma
community. Twenty-nine brochures are
available in three languages to help people
better understand, manage and cope with
the different manifestations of scleroderma
including Sjogren Syndrome and Raynaud
Phenomenon. The information has been
reviewed by members of the Medical Advisory
Board, and is available by request or at various
educational forums, events and conferences
across the country each year.
The Foundation’s network of 23 chapters
and 168 support groups work in communities
across the U.S. to provide patients, their
families, friends and caregivers with
educational programs and meetings. For
individuals who do not live near a chapter or
support group, or who are unable to attend
a support group meeting, the Foundation
offers several different online services to
connect such as Facebook and Twitter, or
a 24/7 discussion board through Inspire
(www.inspire.com.) Each website offers a
supportive forum for advice, collaboration and
encouragement.
Local and national support groups, events
and services sponsored by the Foundation’s
National Office, chapters or support groups
enable individuals affected by scleroderma
to gain the necessary tools to battle the
disease. Together, the Scleroderma Foundation
hopes to support and enhance the lives of
the scleroderma community by empowering
individuals and communities to take action
against the disease.
Eunice Salter was only five years old when she
developed symptoms of scleroderma. It took another
13 years before she received a definitive diagnosis.
Sadly, it took another 10 years before Eunice ever
interacted with someone else living with scleroderma.
That all changed when Eunice received a 2010
Scleroderma Foundation scholarship to the National
Patient Education Conference in Boston.
“For years, my primary means of education and
support had been the Foundation’s website. While it
did provide a wealth of information, the conference
showed me that I had underestimated the power and
importance of face-to-face support and interaction. It
was magical,” shared Eunice.
“If I had to sum up feelings the conference evoked
in me with one word it would be ‘hopeful’. I now feel
rooted in the promise and hope of tomorrow thanks
to the support the Foundation made possible. I saw
others struggling and heard what they had been
through. I met so many heroes that weekend. It made
me realize that while I am not completely healthy, I’m
still blessed. Those heroes put my daily struggles
into perspective. They made me think about my
future, and the many things I still want to accomplish.”
“The Foundation was the catalyst that connected me
with others.”
Scleroderma Foundation 2010 Annual Report
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Better Understanding
Knowledge provides hope to all
those facing scleroderma. Learning
more about the disease is essential
to advancing the health and wellbeing of the greater scleroderma
community.
Education
EDUCATION is a central part of the
Foundation works to add new information on
Foundation’s mission. It closely intertwines
its website (www.scleroderma.org) to provide
with awareness as it ensures individuals and
vital information. The website received
communities are better informed about the
nearly 3.5 million page views in 2010. It is
disease. The Foundation, a leading educational increasingly becoming a one-stop resource for
resource in the U.S., provides information
the entire scleroderma community around the
and resources to patients, families, medical
world. Scleroderma patients, family members
professionals and the public. We offer a variety and caregivers also visit the Foundation’s
of educational programming, published
Inspire discussion board (www.inspire.com)
literature and online tools.
for helpful advice and resources 24/7.
The Foundation continues to educate the
Our chapters host patient education seminars
entire scleroderma community through
each year. In 2010, there were more than 50
educational events held, where attendees were online and traditional print publications. The
weekly email newsletter, or eLetter, continues
able to hear from some of the most respected
to attract attention. More than 9,500 people
scleroderma experts in the country, and
subscribe to receive weekly updates that
connect with other patients or caregivers.
Each year the Foundation strives to reach out include helpful tips for patients and caregivers,
research information and
to health care professionals,
more. “Scleroderma Voice,”
especially physicians, at annual
The Scleroderma
a quarterly magazine for
conferences and trade shows.
Foundation continues
Foundation members,
In 2010, the Foundation
to expand its outreach
educates readers through
hosted exhibits at conferences
to everyone within the
held by the American College
disease’s community, as in-depth articles with
well as those who may scleroderma experts,
of Rheumatology (ACR),
American College of Physicians not have heard the word caregivers and patients.
“scleroderma.”
Articles strive to provide
(ACP) and the Pulmonary
helpful information to aid
Hypertension Association
individuals living with the disease, as well as
(PHA). Foundation staff noticed a significant
their family and friends. “Direct Connection,”
increase in interest about scleroderma from
a bi-monthly publication for chapter and
conference attendees throughout the year,
support group leaders, continues to provide
and inquiries into the Physician Membership
support and teaching opportunities each
Program.
During June’s Scleroderma Awareness Month, month about leadership, counseling and
awareness.
chapters across the country hold “Stepping
The Scleroderma Foundation continues to
Out to Cure Scleroderma” walk-a-thons. These
events have attracted over 12,000 participants expand its outreach to everyone within the
disease’s community, as well as those who may
and educated others about the disease.
not have heard the word “scleroderma.”
To meet the need of the scleroderma
community’s growing online needs, the
6FOHURGHUPD
6 S H F W U X P
The Scleroderma Foundation’s ECHO campaign
emphasizes the importance of education within
the medical community. The program is aimed
at increasing awareness and knowledge among
targeted healthcare professionals of the need
to screen for—and potentially treat—PAH in its
early stages to improve outcomes in scleroderma
patients. Already, the Foundation, in conjunction
with sponsorship from Actelion Pharmaceuticals
US, Inc. and Pfizer, Inc., has launched an “ECHO”
website and developed the “Scleroderma
Spectrum”, a medical publication that focuses
on screening, treatments, research updates, and
patient care for medical professionals.
In October of 2010, the Foundation published a
second “Scleroderma Spectrum” which featured
the article, “Pulmonary Arterial Hypertension
in Systemic Sclerosis: The Importance of Early
Diagnosis.”
Currently, the Foundation is in the third
phase of the campaign, which includes putting
patient-focused educational materials about
PAH screenings and tests into the hands of
healthcare professionals so they can provide such
information to their patients.
Scleroderma Foundation 2010 Annual Report
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“Where Revolutionary Ideas Begin”
The 2010 National Patient Education Conference
The 2010 National Patient Education
Conference offered 56 workshops, including
18 new sessions. Led by world-renowned
scleroderma researchers, physicians and
other professionals, the “Linda Lee Wells
Memorial Workshops” offered the most
recent information and resources.
More than 600 people
for Rheumatology and
attended the Scleroderma
Connective Tissue Disease,
Foundation’s National Patient
opened the conference with
Education Conference in 2010
her keynote presented to a
held in Boston. The annual
standing-room only crowd.
event was the largest in the
Following the opening
Actelion Pharmaceuticals US, Inc.
organization’s history, and
keynote, Harrison Farber,
2010 National Gold Sponsor
brought together patients,
M.D., hosted a grand lecture
family members, caregivers
about “Pulmonary Arterial
and health care providers to learn the latest
Hypertension in Scleroderma.” The 2010
information about scleroderma.
conference offered 56 workshops, including
With the support of the Foundation’s New
18 new sessions. Led by world-renowned
England Chapter, “Where Revolutionary Ideas
scleroderma researchers, physicians and
Begin,” offered a unique opportunity for
other professionals, the “Linda Lee Wells
patients to share information and personal
Memorial Workshops” offered the most recent
experiences, and provided a place to reach out information and resources. The Foundation
to others facing the same challenges, concerns also collaborated with the Raynaud’s
and triumphs while living with scleroderma.
Association to provide workshop sessions and
Conference sponsors - Actelion
resources for patients living with Raynaud
Pharmaceuticals US Inc., Pfizer, Inc., Gilead
Phenomenon.
Sciences, Inc., and United Therapeutics each
The Awards Banquet on Saturday
hosted interactive booths and exhibits to offer
night celebrated and recognized the
additional educational offerings during the
accomplishments of chapters and individuals
event. Other exhibition tables were hosted
in 2010. Country singer and songwriter
by partner organizations such as Pulmonary
Angela Martinez, of Nashville, performed her
Hypertension Association and NeedyMeds,
song “Right There,” a composition dedicated
Inc. Thanks to the generosity of Actelion
to all individuals living with scleroderma.
Pharmaceuticals US, every conference
Foundation CEO Robert J. Riggs also
attendee received the debut edition of the
announced that 2011’s annual event would be
Foundation’s Health Care Management Binder, held in San Francisco.
a valuable resource to help patients organize
The conference concluded on Sunday with a
their personal medical information including
closing keynote by Stephen I. Katz, M.D., Ph.D.,
doctor’s contacts and medications.
who discussed research as it pertained to the
More than 250 people were first-time
National Institutes of Health. Dr. Katz is the
attendees to the conference. Twenty-seven
director of the National Institute of Arthritis
people were able to travel to Boston as
and Musculoskeletal Skin Diseases.
recipients of scholarship awards which
were made possible by the Walter A. Coyle
Memorial Scholarship Fund, the Susan Marie
Scleroderma Foundation, the Michele Booth
Memorial Scholarship Fund and individual
donations. (See side panel.)
Dame Carol M. Black, the director of
Pfizer, Inc., 2010 Platinum
Gilead Sciences, Inc., 2010
Conference Sponsor
Bronze Conference Sponsor
the University College London Centre
For first time attendees, the National Conference
brings hope to those who thought they were alone in
the fight against scleroderma. Twenty-seven first time
attendees were able to come to the 2010 National Patient
tEXT
hERE.
Education
Conference as recipients of scholarships. The
scholarships, which included both partial and full funding for
29 deserving individuals, were made possible by the Walter
A. Coyle Scholarship Memorial Fund. The Fund, which has
become an annual program, was developed in honor of
the late Walter A. Coyle’s longstanding efforts to promote
support and education services for scleroderma patients
and their families. Scholarship support also came from
many individuals, chapters, the Susan Marie Scleroderma
Foundation, and Actelion Pharmaceuticals U.S.
After her experience at the conference, scholarship
recipient Krista Hicks wrote, “Without this scholarship,
it would have been impossible for me to attend, and I am
extremely thankful I was there. I feel like I came away with
a better understanding of the disease. I was fortunate to
make many new friends and we all made a pact to attend
next year.”
The 2010 Scholarship Fund demonstrated an overall
growth in applications received, funds raised, and
scholarships awarded compared to its inaugural year in
2009. Scholarship contributions increased from $16,000 in
2009 to $26,000 in 2010, thus allowing the Foundation to
provide an additional 10 scholarship awards.
The Foundation would like to thank the Scholarship
Committee, chapter and support group leaders and staff,
and all those who contributed to the development and
success of the 2010 Scholarship Fund. “Together, we
have provided hope and opportunity to many members
of the global scleroderma community,” stated Director of
Development and Research,Tracey O. Sperry.
Scleroderma Foundation 2010 Annual Report
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Facilitating Awareness Advocacy
Together, we have the power to make
things happen and to drastically
increase the resources for people
living with scleroderma.
Emily Hill and Cindi Brannum from
the Foundation’s Texas Bluebonnet
Chapter fulfilled that statement when
they met with U.S. Rep. Joseph
Barton of Texas to talk about the
Scleroderma Awareness Bills, H.R.
2408 and S. 1545. Also pictured
is Darren Hill, from Health and
Medicine Counsel of Washington.
In the photo above, Mary Blades,
president of the Missouri Chapter
and a member of the National
Board of Directors, testifies at the
“New Dimensions and Strategies
for Women’s Health Research for
the National Institutes of Health”
conference in Atlanta.
The Scleroderma Foundation’s commitment
The scleroderma community joined together
to both local and national ADVOCACY
and their message resonated on Capitol Hill.
initiatives continued to prove even more
Shortly after midnight Sept. 30, 2010, the
successful in 2010.
House unanimously passed the bill. Even
In 2009, Rep. Lois Capps of California and
though the bill failed to pass in the Senate, Sen.
Rep. Vern Ehlers of Michigan, introduced
Gillibrand continued to urge fellow lawmakers
the “Scleroderma Research and Awareness
to vote in favor of scleroderma research
Act” (H.R. 2408) in the U.S. House of
funding.
Representatives. The bill would expand
“The passage of H.R. 2408 is truly a
federal support for the disease at the National
testament to the determination of the
Institutes of Health (NIH), increase awareness
scleroderma community to have their voices
of scleroderma among the general public and
heard in the halls of Congress,” said Riggs.
health care providers, and support training
“The effort to get the ‘Scleroderma Research
new scleroderma researchers. News of the bill and Awareness Act’ through committee, and
spread to the Senate aisles, where Sen. Kirsten ultimately passed, has truly galvanized the
E. Gillibrand later introduced S.1545.
entire Foundation membership. We have to
On June 16, as part of Scleroderma
keep making our collective voice heard.”
Thanks to the unwavering
Awareness Month, 18
energy and determination
Foundation members
“The passage of H.R. 2408
of the advocacy teams, the
and chapter leaders
is truly a testament to the
scleroderma bills won the
visited policymakers
determination of the scleroderma
support of an additional six
and elected officials
community to have their
confirmed cosponsors in the
on Capitol Hill. Their
voices heard in the halls of
House of Representatives,
message was loud
Congress.”
bringing the totals to 63
and clear: more funds
cosponsors in the House and
should go to find the
four in the Senate. Thanks to the collaborative
cause and cure for scleroderma. To that end,
efforts of HMCW, the Scleroderma Foundation’s
advocates strongly pushed Congressional
Advocacy Committee, chapter staff and
leaders to pass the legislation. “Our message
scleroderma supporters nationwide, the
was obviously heard,” said Robert J. Riggs,
scleroderma bills continued to gain even
the Foundation’s CEO. “Not only through our
greater support from lawmakers.
meetings on Capitol Hill, but also through
Brian Ross Adams said, “We have truly raised
the countless phone calls and emails that
members of the scleroderma community made awareness of scleroderma and we should all be
very proud.” Adams is executive director of the
throughout this process.”
Southern California Chapter and chair of the
With the help of the Advocacy Committee,
Advocacy Committee.
Health and Medicine Counsel of Washington
(HMCW) staff, and grassroots advocates,
Visit the Scleroderma Foundation’s Advocacy
the Scleroderma Foundation also hosted the
Page at www.scleroderma.org/advocacy to
National Congressional Call-in Day on Sept. 15. discover how you can join our advocacy efforts.
In March 2010, Rep. Lois Capps (D-CA), along with
Rep. Vern Ehlers (R-MI), introduced “The Scleroderma
Research and Awareness Act” into the U.S. House of
Representatives.
Capps, who has represented San Luis Obispo, Santa
Barbara and Ventura counties in southern California
since 1998, has worked diligently to bring scleroderma
awareness
tEXT hERE.into the forefront in Congress. The
congresswoman met with patients and their family
members throughout her district like 14-year-old Cynthia
Cervantes, and her mother Leticia, from Huntington
Park, Calif.
"I am so thankful to Congresswoman Capps for taking
up our cause. When Cynthia and I met with her, we
knew she would do whatever she could to help my
daughter and scleroderma patients across the country.
She and her colleagues in Congress have given us new
hope today by passing this important legislation. She is
our angel," said Leticia.
“Women account for 80 percent of scleroderma
diagnoses making this particularly important to the
women’s health community. The exact cause or causes
of scleroderma are still unknown and there is no
cure, which make greater research into this disease
all the more necessary. Passage of this bipartisan
legislation will offer hope to the hundreds of thousands
of scleroderma patients nationwide,” said Rep. Capps
in a press release shortly after the U.S. House of
Representatives unanimously passed the bill on
Sept. 30, 2010.
While the bill did not pass in the Senate during the
last session of Congress, Capps was undeterred.
She has again introduced legislation in the House of
Representatives to help the scleroderma community.
Scleroderma Foundation 2010 Annual Report
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Turning Hope into Reality
Research
Andreea Bujor, M.D.
Jessica Gordon, M.D.
Harrison Farber, M.D.
Erica Herzog, M.D.
Edward Leof, M.D.
Eileen Hsu, Ph.D.
Arnold Posthlewaite, Ph.D.
What makes the Scleroderma Foundation
both unique and progressive has much to do
with its commitment to scleroderma
RESEARCH. Funding quality research projects
is the top priority of the Foundation, and in
2010 we continued the long-standing tradition
of making research our single-largest budgeted
expense.
Established in 1989, the program’s budget
has grown to allocate an average of $1 million in funds annually. The Foundation and its
predecessor organizations have funded more
than $18 million in research grants making it
the largest nonprofit supporter of scleroderma
research in the United States, second only to the
federal government.
Many past recipients who started their work
with “seed money” from the Foundation have
gone on to receive major funding from the National Institutes of Health (NIH) and the Department of Defense. The Research Grant Program
has earned a unique place in the field of scleroderma research and is respected by government
health agencies and has served as a model for
other patient advocacy organizations.
“Our understanding of scleroderma has
increased dramatically over the past decade,
thanks to the continued support of the
Scleroderma Foundation’s Research Grant
Funding Program”, stated Carol FeghaliBostwick, Vice Chair of the Foundation’s Board
of Directors. “The program is vital not only to
advancing the state of research on scleroderma,
but also motivating new researchers to take an
interest in the disease,” she continued. New
investigator, Dr. Andreea Bujor echoed, “It is
great to have a team of people dedicated to the
fight against scleroderma like the Foundation’s
leadership and donors, who help young
investigators in their scientific pursuits to
find a cure for this terrible disease. I feel very
honored and grateful to be able to take our
research in new directions.”
In 2010, 31 proposals were reviewed and
seven were selected according to merit by the
Foundation’s Peer Review Committee. The Peer
Review process, guided by NIH protocol and
criteria, ensured Foundation dollars were put
towards the strongest research proposals.
Dr. Jessica Gordon, a grateful awardee shared,
“This grant has enabled me to initiate my career
with dedicated time and focus on research with
the overarching aim to improve the lives of
scleroderma patients.”
The two highest scoring research proposals
received the Foundation’s Marta Marx and Mark
Flapan awards. The Marta Marx Eradication of
Scleroderma Award went to Eileen Hsu, M.D., a
new investigator from the University of Pittsburgh. The award is funded by bequests from
Marta Marx, who had scleroderma, and her
brother Rudolph Juhl. The Mark Flapan Award
was received by Harrison Farber, M.D., an established investigator from Boston University
School of Medicine. It is named in honor of the
late psychologist and scleroderma patient Mark
Flapan.
The Walter A. Coyle Memorial Research Grant
Award, made possible through the generosity
of the Scleroderma Foundation’s New England
Chapter was presented to Andreea Bujor, M.D.
from Boston University School of Medicine.
“The Foundation is proud and honored to continue to fund exceptional researchers who have
both scientific and clinical expertise needed
to conduct groundbreaking studies – for it is
our hope that our funds will make a significant
difference to researchers whose investigations
may lead to a cure,” stated Tracey O’Connell
Sperry, Director of Development and Research.
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 who have contributed to raising funds
for the research grant program.
Norma Nadeau/Mary Van
Neste New England Chapter
Research Grant
Chapters contribute to all aspects of the Foundation’s
mission, including the Foundation’s Research Grant Program.
Thanks to continued developments in chapter fundraising
initiatives, chapters considered how they might donate even
more funds to the research program. In 2009, the New
England Chapter of the Scleroderma Foundation took the
lead and generously established a research grant award.
The award was created not only to fund additional research,
but also to honor the memory of Norma Nadeau and Mary
Van Neste - two great women who were instrumental in the
formation of the Scleroderma Association support group that
later become the Scleroderma Federation.
The Chapter’s second award was given in 2010 to
established investigator, Andreea Bujor, M.D., of Boston
University
School of Medicine for the project, “The Role of
tEXT hERE.
Caveolin-1 Overexpression in Scleroderma Fibrosis”. Below
is a synopsis of her project.
Scleroderma (SSc) is a chronic progressive multiorgan
disease. Among other symptoms, patients with this
disease have excessive hardening of the skin (fibrosis)
due to increased deposition of collagen by the cells in
the skin called dermal fibroblasts. The pathogenesis of
scleroderma is still poorly understood and there is no
cure for SSc fibrosis. Several proteins in the fibroblasts of
SSc patients are deregulated and it is believed that these
alterations contribute to SSc skin fibrosis. In our proposal
we hypothesize that overexpression of a protein called
caveolin-1 has an important role in activating two pro-fibrotic
signaling pathways in the fibroblasts of SSc patients: the
Smad1 and PKCδ/Fli1 pathways. We propose to utilize
recently developed technologies based on adenovirus
overexpression and RNAi to investigate the effects of
caveolin-1 deregulation in cultured SSc fibroblasts. In this
study, we will also use mouse models that overexpress
caveolin-1 in their skin to understand the consequences
of caveolin-1 overexpression in SSc patients. Our long
term goal is to elucidate the role of aberrant caveolin-1
expression in SSc fibrosis, which may help select patients
for future caveolin-1 based therapies.
Scleroderma Foundation 2010 Annual Report
|
15
Tomorrow’s Cure Starts Today
Marta Marx Eradication of
Scleroderma Award
Eileen Hsu, M.D.
New Investigator
University of Pittsburgh
IGF-II-mediated Fibrosis in Systemic
Sclerosis
Lung complications are the leading cause
of mortality in systemic sclerosis (SSc).
Pulmonary fibrosis in SSc is the excessive
accumulation of scar tissue in the lung. Few
therapies exist that adequately treat this fatal
complication. Pulmonary fibrosis is believed
to be mediated by the interaction of several
growth factors that stimulate scar formation
in the lungs. We have previously reported
that insulin-like growth factor-II (IGF-II) is
increased in the lung tissues of patients with
SSc-related pulmonary fibrosis. Furthermore,
we have shown that IGF-II induces production
of proteins that contribute to scar formation.
By utilizing a unique bank of lung tissues
from SSc patients who underwent lung
transplantation at the University of Pittsburgh,
we propose to study the mechanisms by which
IGF-II induces lung fibrosis. We also propose
to study the genetic mechanisms that regulate
IGF-II overexpression in SSc lungs. We will also
measure IGF-II in the blood stream of patients
with SSc to determine if IGF-II is associated
with other patient characteristics and if IGF-II
is predictive of the development of pulmonary
fibrosis. Our research studies will provide a
novel mechanism of disease pathogenesis and
may lead to new targets for drug therapy for
SSc-related pulmonary fibrosis.
2010 Research Grant Awards
Mark Flapan Award
Harrison Farber, M.D.
Established Investigator
Boston University School of Medicine, Boston
The “PAH Phenotype” in Limited Systemic
Sclerosis
Increased pressure in the blood vessels of the
lungs (pulmonary hypertension; PH) is a common
complication of scleroderma (SSc) and is an
important cause of mortality. Whether PH in
scleroderma is similar to other forms of PH is not
known. However, scleroderma is associated with
damage to cells lining blood vessels (endothelial
cells; EC) and increases in inflammation. In
this grant, we will study whether changes
in blood vessels increasing the risk of PH in
scleroderma patients are due to EC damage and/
or inflammation. We will study genes and proteins
that could account for these changes in blood
vessels and determine if they differ from genes
and protein in scleroderma patients who develop
interstitial lung disease (lLD; scarring in the lungs).
In summary, we are trying to find specific markers
that determine which scleroderma patients develop
PH, which scleroderma patients develop lLD, and
which scleroderma patients develop neither PH
nor lLD. Hopefully, these studies will find markers
that could allow better screening and care of
scleroderma patients and will determine better
ways to monitor clinical course.
Norma Nadeau/Mary Van Neste
New England Chapter Research
Grant
Andreea Bujor, M.D., M.S.
Boston University School of Medicine,
The Role of Caveolin-1 Overexpression in
Scleroderma Fibrosis (see insert on page 15 for
more information.)
Other Awardees
Jessica Karen Gordon, M.D.
Hospital for Special Surgery, New York, NY
Gene Expression Profiling and Predictors of
Outcome in Systemic Sclerosis
The underlying cause of sderoderma is not
completely understood, and, because of this,
treatments for scleroderma are not curative. In this
project we seek to improve our understanding of
factors involved in the development of scleroderma,
aspects which determine prognosis and targets
for therapy. Ongoing at our institution is a clinical
trial evaluating the safety and efficacy of imatinib
mesylate (Gleevec) for the treatment of diffuse
scleroderma. Preliminary results show significant
improvement in skin and lung parameters. In this
project, we will use DNA microarray, a powerful
tool which enables us to measure the amount of
production of over 38,500 genes from a single
specimen on one gene-chip, to perform gene
expression profiling on skin and blood samples
from patients before and after treatment with
imatinib and from controls. We will look for
changes in gene expression with therapy and for
predictors of response to imatinib. We will examine
whether targets expressed in blood correlate with
those seen in skin. Using these results we will
validate potential biomarkers of disease activity
and prognosis in a separate group of patients
and controls. The knowledge gained in these
investigations should provide new directions for
the understanding of scleroderma.
Semaphorin 7a in the differentiation and
accumulation of fibrocytes in the diseased lung in a
mouse model of pulmonary fibrosis and increased
levels of Semaphorin 7a in the blood of patients
with scleroderma-induced lung disease. This
protein plays a pivotal role in brain development
and has more recently been described as a
regulator of immune cell activation. Aside from
our preliminary work, there is no link between
Semaphorin 7a, fibrocytes and scleroderma. It is
Erica Herzog, M.D., Ph.D.
this area that our proposal seeks to explore.
Yale University
Thus, Aim 1 of this proposal will determine the
Semaphorin 7a-Mediated Regulation of
mechanism through which Semaphorin 7a affects
Fibrocyte Biology in Scleroderma ILD
the differentiation and activation of fibrocytes
obtained from patients with scleroderma lung
Systemic sclerosis (SSc) is a devastating disease
disease. Aim 2 will determine the mechanism and
in which the skin and internal organs are replaced
cell types through which Semaphorin 7a and its
by scar tissue and collagen. While great progress
receptors promote or inhibit the differentiation
has been made in treating the kidney complications and activation of fibrocytes in a mouse model of
of this dreaded disease, lung complications have
pulmonary fibrosis.
emerged as a major cause of mortality. One major
It is our belief that these highly innovative and
category of scleroderma induced pulmonary
robust studies will strengthen the novel association
involvement is interstitial lung disease (ILD), or
we have uncovered between Semaphorin 7a,
replacement of the gas exchange region of the lung fibrocytes and SSc-ILD, and perhaps provide insight
with scar tissue. As there are only limited treatment into disease pathogenesis that could be used for the
options for this problem, many patients with SScdevelopment of novel therapeutic targets for this
ILD progress to respiratory failure and, ultimately,
otherwise incurable disease.
an untimely death. Thus, a greater understanding
of the factors promoting lung fibrosis remains a
Edward Leof, Ph.D.
great priority in this disease.
Mayo Clinic Rochester
One emerging area of interest in this area is
TGF-beta Regulated Fibrosis
the role that certain types of immune cells called
“fibrocytes” may play in the development of
scleroderma lung disease. Elegant studies by
Transforming growth factor ß (TGF-ß) is a
a number of investigators including our own
multifunctional protein which can be either
have found that these cells, rather than being
helpful or harmful to human health. While its
programmed to fight infection, are skewed towards ability to stimulate cell growth is important for
a program of scar formation. Fibrocytes are
normal wound healing, when unchecked the
associated with the development of scleroderma.
function of many organs can be disrupted by scar
Unfortunately, the mechanisms that regulate
(i.e., fibrosis) formation. Since approximately 45
fibrocyte biology are not well understood.
percent of mortality in the developed world is
We have recently found a novel role for
caused by some type of chronic fibroproliferative
pathology, addressing this issue is critical. To
that end, as the number of effective therapies are
limited, the current application will, finally test
whether simultaneously targeting multiple TGF-ß
pathways can provide the necessary preclinical
data to generate a new Phase I/II clinical trial;
and second, develop a novel bioassay to screen
for small molecule inhibitors of fibrotic diseases,
including scleroderma/systemic sclerosis.
Arnold Postlethwaite, M.D.
University of Tennessee Health Science
Center
Ssc Platelet Phenotype Affected by Cytokines
It is generally believed that one of the initial events
in hemostasis is the interaction of platelets with
underlying collagen of the damaged vessel walls.
When blood platelets come into contact with
the damaged vessel wall, they clump together to
form thrombi (clots). The vessel wall component
involved in this process is thought to be a protein
constituent known as collagen. Ongoing microvascular injury is a hallmark of systemic sclerosis
(SSc or scleroderma). The micro-vascular injury
is associated with micro-thrombi (small clot)
formation secondary to platelet aggregation.
Platelets are tiny fragments of cells called
megakaryocytes. Under normal condition, these
platelets circulate in the blood vessel. When they
come into contact with damaged vessel walls
they become sticky. This property is caused by
the chemical changes that occur inside of the
platelets, which can trigger the stickiness of
platelets. Under this condition, tanned platelets
interact with each other to form small aggregates
(micro-thrombi). They affect blood circulation. We
hope to understand why chemical changes occur
in platelets and what are the mechanisms that
control the chemical changes, which could be used
to modulate the activation of platelets that causes
pathological thrombi formation in SSc.
Scleroderma Foundation 2010 Annual Report
|
17
Philanthropy in Action
During a broadcast of CBS’ “The
Early Show” in 2010, former anchor
Harry Smith helped promote the TriState Chapter’s “Stepping Out to Cure
Scleroderma” walk-a-thon at Battery
Park in Manhattan.
Development
The work of the Foundation would not be
possible without the generosity of our donors.
From individual gifts to corporate sponsors,
from major chapter events to national initiatives, 2010 was a year rich in philanthropic
support despite continued fiscal turbulence. It
is very heartening to see that the work we do
to fight scleroderma is still something in which
many are willing to invest. 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.
It is the belief in the Foundation’s threefold mission that spurs the generosity of our
donors. It is the hope of a cure that drives
us forward in funding the most promising,
peer-reviewed medical research happening
throughout the country. Because our supporters believe in the strength of our mission and
trust in our ability to carry that mission out,
the Scleroderma Foundation continues to be
a leader in patient education and support services, and a resource for researchers working
to eradicate this disease.
Support to the Foundation comes in many
shapes and sizes – from a walk of 500 people
to a children’s birthday party, from a marathon
run 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 sets the Foundation to benefit
millions of people with scleroderma for years
to come.
Although all the efforts made by so many to
support the Foundation are too numerous to
mention, below are some philanthropic highlights of 2010:
Stepping Out to Cure Scleroderma
Walkers and runners from across the country
took many strides in 2010 to support the
Scleroderma Foundation through its signature
event, “Stepping Out to Cure Scleroderma”.
Thousands of people walked and raced to help
raise awareness and money for the Foundation.
Chapters, support groups, and individuals
hosted 44 “Stepping Out to Cure Scleroderma”
events in 23 states. These fundraising and
awareness events raised more than $1.1
million for the Foundation. There also were
seven inaugural walk-a-thons events held
in 2010.
Events were held at parks, trails, running
tracks and shopping centers. Each year, these
events provide a great way for supporters of
the Scleroderma Foundation to come together
and help advocate for a great cause.
Beyond the financial success of the events,
“Stepping Out to Cure Scleroderma” walks
raise an inestimable amount of awareness and
generate significant media coverage in cities
small and large throughout the country.
National Gold Sponsor
For the third year in a row, the Scleroderma
Foundation was gratified to have Actelion
Pharmaceuticals US, Inc., as its National
Sponsor. Through this important partnership,
the Foundation received an unrestricted
educational grant that provided significant
underwriting to support key programs and
services, both at the national and chapter
levels. Among the programs that benefited
from the support of Actelion in 2010 were:
• The National Patient Education Conference
in Boston
• The Chapter and Support Group
Leadership Conference, also in Boston
• “Stepping Out to Cure Scleroderma”
walk-a-thons
• Chapter patient educational events
• National patient support activities,
including the Foundation’s website,
patient information packs, new patient
education literature and the national tollhfree Helpline.
• Support of the Foundation’s Echo
Campaign (see sidebar on pg. 9)
The Scleroderma Foundation leadership
is profoundly grateful to Actelion for their
continued and significant support of the
work and mission of the organization. Their
corporate philanthropy has had a profoundly
positive impact on the Foundation’s ability to
grow and improve services to the scleroderma
community.
Chapter Support of National Initiatives
and Programs
In 2010 there was a significant increase in the
chapters of the Scleroderma Foundation giving
dollars from their local treasuries to support
initiatives and programs at the national level,
thus advancing the true synergistic partnership
between the national office and 23 chapters
that are 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 and in 2010
collectively provided more than $400,000
through voluntary research contributions.
These voluntary research contributions are
given out of chapters’ budgetary surpluses
or cash reserves. The level of such support
is a true testament to the common hope that
everyone within the Foundation shares – the
hope of a cure.
Beta Sigma Phi
For 29 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 a million
dollars to support the Scleroderma Foundation.
This year, the philanthropic chairs donated
close to $50,000 for the various California
councils and the national organization.
The Petitt Family with Brian Ross Adams
No words are strong enough to convey the tremendous debt of gratitude that is owed to the recipients of
the Scleroderma Foundation’s Outstanding Individual
Fundraising award for their efforts in 2010.
The Pettit family of Coto de Caza, Calif., established
the annual “Fight for Lexi Charity Golf Tournament”
and continuously supports the Southern California
“Stepping Out to Cure Scleroderma” walk-a-thon.
This selfless family has raised more than $350,000
for the Scleroderma Foundation during the past three
years alone.
“We greatly appreciate the work that Chris, Melinda
and Lexi have done, and how committed they are to
helping those living with scleroderma,” said the Southern California Chapter Executive Director Brian Ross
Adams.
The Pettit family has provided significant hope and
support for the entire scleroderma community through
their continued effort to generate awareness and
funds for the Foundation.
Scleroderma Foundation 2010 Annual Report
|
19
The following document
was developed by the
American Association of
Fund Raising Counsel, the
Association for Healthcare
Philanthropy, the
Association of Fundraising
Professionals, and the
Council for Advancement
and Support of Education.
It has been endorsed by
numerous organizations
including the Scleroderma
Foundation.
The Donor Bill of Rights
Philanthropy is based on voluntary action for the common good. It is a tradition of giving
and sharing that is primary to the quality of life. To assure that philanthropy merits the
respect and trust of the general public, and that donors and prospective donors can have
full conficdence in nonprofit organizations and the causes they are asked to support, we
declare that all donors have these rights:
• To be informed of the organization’s
mission, of the way the organization
intends to use donated resources, and of
its capacity to use donations effectively for
their intended purposes.
• To be informed of the identity of those
serving on the organization’s governing
board, and to expect the board to exercise
prudent judgment in its stewardship
responsibilities.
• To have access to the organization’s most
recent financial statements.
• To be assured their gifts will be used for
the purposes for which they were given.
• To receive appropriate acknowledgement
and recognition.
• To be assured that information about their
donations is handled with respect and
with confidentiality to the extent provided
by law.
• To expect that all relationships with
individuals representing organizations of
interest to the donor will be professional
in nature.
• To be informed whether those seeking
donations are volunteers, employees of the
organization or hired solicitors.
• To have the opportunity for their names
to be deleted from mailing lists that an
organization may intend to share.
• To feel free to ask questions when making
a donation and to receive prompt, truthful
and forthright answers.
Come to Historic Boston for the
Scleroderma Foundation
2010 National Patient Education Conference
The generous support of individuals, families, businesses,
foundations and organizations plays a crucial role, and enables
the Scleroderma Foundation to continually renew and expand its
commitments to the scleroderma community from year-to-year.
This philanthropy allows the Foundation to create programs that
affect the lives of those living with scleroderma.
We could not fulfill our mission of service to patients and families,
nor provide funds to advance research to find the cause and cure
for this disease, without the continued and generous support of so
many people from across the U.S. and the world. Individual gifts are
the pillar of the Scleroderma Foundation, and no words are strong
enough to express the tremendous debt of gratitude that is owed to
those who support the Foundation’s mission and work.
Robert J. Riggs, Chief Executive Officer
We are committed to excellence in each aspect of our mission of
support, education and research, and 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.
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 2010 with a gift of $500 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.
Thank you for your continued support of the Scleroderma
Foundation and the commitment we share with you to advance our
mission.
With gratitude,
Chief Executive Officer
“Where Revolutionary Ideas Begin”
Scleroderma Foundation 2010 Honor Roll of Donors
$50,000+
Actelion Pharmaceuticals US, Inc.
Combined Federal Campaign
Paula May
Estate of Philip L. Milton
Pfizer, Inc.
$25,000 – $49,999
George and Lisa Etheridge
Gilead Sciences, Inc.
Sanford Goldston
Estate of Zena B. Hellman
Estate of Joan Lindeman
Estate of August Negro
Estate of Maureen Hope O’Connor
Southern Wine & Spririts of America
$10,000 – $24,999
In 2010, 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.
Joseph and Joann Anatasi
Dennis Benner
Bethpage Federal Credit Union
Jules and Leslie Cogan
The Duke Family
Deborah and Ed Gallup
George Gottesman
Gerold Kirschner
Charles Lawrence
Lacy MacCutcheon Golf
Mario Dozzo Foundation
Mary Morton
Barbara Musco
Estate of Dorothy E. Paulson
Estate of Angela Snyder-Bellew
Teri’s Run Foundation
Terlato Wines International
Young’s Market Company
Sol and Tina P. Waxman Foundation
Estate of Wilbert E. & Hannah
Wilhelm, Sr.
Estate of Gloria H. Wurthner
United Therapeutics, Inc.
$5,000 – $9,999
Anonymous
Phil and Peggy Adams
Are You Smarter Productions, Inc./Chris
Harrison
Bank of America Matching Gift Fund
Beta Sigma Phi Endowment Fund
Beta Sigma Phi/Northern CA Council
Beta Sigma Phi/Orange Coast California
Council
Beta Sigma Phi/Southern California
Council
Albert Bradford
Marlene Calverley
Dr. Joseph and Theresa Camerino
Sarah Campbell
Russell & Debbie Chicoine
Janet Chinelli
Columbia Construction
John Devaney
Mark R. Eaker, M.D.
Valentine Fenti
Herbert Goldberg
Peter and Carol Goldman
Bruce Gordon
John Hummer
Kohl’s Gives
KPMG Community Giving Campaign
The Kroger Company
The Kroger Company, Ralph’s, Food 4 Less
Saul and Eleanor Lerner Foundation, Inc.
William Ludel
Main Street Events
The June and Cecil McDole Charitable
Fund
Jack Napoli
Maria Narvaez
Old Bridge Rotary Senior Housing, Inc.
Darin Perri
Helen Polenz
Prime Motor Group
Rose Hills Foundation
David Rosenberg
Lauren Anne Scarantino
Steven and Susan Scholer
Adriane and Jonathan Schorr
Steven J. Seidemann
Michael Stave
SWS Charitable Foundation
S. Jerome Tamkin, M.D.
John and Patricia Tishler
Freddie and Jodi Vasquez
Norman & Marilyn Weizenbaum
Philanthropic Fund, Of The UJFF
Mark Witek
$1,000 – $4,999
Anonymous (3)
215 Golf Classic
Ransom & Charmaine Adams
Adart Company
Sidney & Beatrice Albert Foundation
Allgood Pest Solutions
Barry Alt
Michael Ammirabile
AMSPEC Services LLC
Jeffrey Anderson
Michael S. Anderson
Teresa Andresen
Arch Insurance Group
Cheryl Argiros
Association of Philippine Physicians
Autoimmune Association
Koren Ayers
Suzy Ballantyne
Mary Ann Barrett
Stacy J. Barron
Alvin H Baum Family Fund
Reginald and Margaret Bayley
Stephanie Beck
Carole Beeson
June L. Bender
Kay Benjamin
Fran Bernstein
Craig and Cynthia Besselievre
Best Buy Co., Inc.
Beta Sigma Phi/Camino Real California
Council
Beta Sigma Phi/Central CA Council
Beta Sigma Phi/Far Northern CA Council
Beta Sigma Phi/Mission CA Council
Beta Sigma Phi/Pacific CA Council
Mary and Ben Blades
Gloria Blanco-Duque
Ann M. Bommarito
Dr. and Mrs. Bookbinder
Rob and Teresa Branson
Michael Bresnahan
Carl and Peggy Briggs
Roni S. Brown
Bruce and Judith Brunson
Heather P. Burns
Mr. and Mrs. Jason Calverley
Cardinals Care
Lisa M. Carpentiere
H. Carr & Sons
Olga Casarella
Patricia Castelhano
The Center For Rheumatology
Central General Medical & Dental
Jan E. Chatten-Brown
Chevron Humankind Employee Funds
Vernon Childs
Emily and Greg Chillino
Antonietta Chiocchi
Ling Bun Chu and Family
Church of Religious Science
Mark and Lisa Cicirelli
Charlotte and Norman Codo
Catherine J. Coggins
Aaron Cohen
Mr. and Mrs. Edward A. Elliott
Lea Collins
Emerson Closetmaid
Kevin P. Conlisk
Emilios Beverage Warehouse, Inc.
Christopher J. Conroy
Nicole Evangelis
Constellation Energy Nuclear
Expert Parking, Inc.
Group
Robert G. Fairfield
Mary Contadino
Robert Fairfield
Coombs Family
Farley’s Appliance
Corrugated Supplies Company
George and Theresa Cotsirilos
Dr. Carol Feghali-Bostwick
Maggie Courtney
Barbara and Larry Field
Bruce Cowan
Fieldman Sims Foundation
Lindsay Cowan
Lesli Flick
Crane Foundation
Dawn and George Fountas
Credit Suisse
Robert Fraley
Crown Painting Inc.
Francis Harvey Sons, Inc.
Daniell Family Foundation
Virgina Fritz
DanversBank
Fusco, Brandenstein & Rada, P.C.
Anthony D’Aquino
Adam Geller
tEXT hERE.
Gail Davis
Barbara and Howard Geller
Judy Davison
Patricia and Peter Gerardi
Amelia DeGeiso
Kathleen K. Gero
Sherlyn Delaney
Glamorise Foundations, Inc.
Kelly and Dean DeLisa
Glynn Electric
Robert and Eleanor Demple
Felicia Gold
Family Foundation
Fred Goldberg
Alex Denahan
Goldbug Parties, Inc.
Wellington Denahan
Barry S. Golden
William C. Dennis
Goldstein Enterprises, Inc.
William and Katharine Dennis
Kevin Gomez
Mr. and Mrs. Armand DePalo
Theresa Gordon
Dr. John Dettmers
Elaine Gottesman
Donald A. Devlin
Dr. Brad Grasman
Margaret Diehl
Patricia Greenhood
Beth Dominguez
Ann Grovenstein-Campbell
John and Maryann Donohue
Harriet H. Gutknecht
Lily Donohue
Beverly Hahn
Sam Doumanian
Kerry Hall
Driggers Family Foundation
Craig R. Hall, M.D.
Kathleen Duncan
H. Lowell Hall
Kate Duprey
Estate of William B. Hanrahan
Robert J. Eck
Mr. and Mrs. Robert Hardman
Eisner Amper
William H. Harms
Scleroderma Foundation 2010 Annual Report
|
23
Scleroderma Foundation 2010 Honor Roll of Donors
Chad and Monica Haufler
Healthcare Research & Analytics
Lynne Heaviside
Helen Kay Foundation
Hobbs Brook Management LLC
William Hosson
Mark T. Howard
HRA Hospital Research Associates
Anna Mae Hull
IBM Employees
Harry Issler
J. M. & A. Group
Frederick Jackson
Samuel Jefferson
Kitsa and Ronald Jobeless
Dawn Johnson
Patricia D. Johnson
Rosa Johnson
Johnson & Johnson Family of
Companies
Bob and Jean Kacick
Kaiser Permanente
Kaloutas Painting
Stephanie Kaminski
Kasin Family Foundation
Judy Katz
Stanley Kaufman
Catherine Kay
Emily King
Daniel and Marie Kivel
Al Klail
Debra Kleban
Walter Kluka-Charitable Unitrust
David Knoller
Knox Building Account
Dara Kotkin
James Krantz
Marc Krieger
Mark Kroh
La Habra Host Lions Foundation
Laclede, Inc.
Herbert A. Lampert
Jeff and Lisa Lanctot
Land Baron Abstract Company, Inc.
Mr. and Mrs. Charles Latham
Dr. and Mrs. George Leopold
Kathleen Leutze
John Levengood
Jack J. Levy
Anne Lewis
Lieben, Whitted, Houghton,
Slowiaczek & Cavanagh P.C.
Limbach Company LLC
Links Golf Club, Bobbi Salmon Golf
Tournament
Erin E. Linnihan
Kristen M. Litwinka
Los Angeles Transportation Club
Lula Wilson Trust
Jeffrey Mace
Shauna Mace
Shannon Macri
Mary and Sam Mahler
Owen and Nancy Makoroff
Betty A. Mallon
Cos Mallozzi and Ronni Shulman
Andrew J. Manganaro, M.D.
George and Karen Manson
Lawrence and Nancy Marcus
Ronald and Rosemary Markoff
Brian Marsalli
Robert F. and Kira J. Maton
Mr. and Mrs. Robert A. May
McCarter and English
Alan R. McDaniel
Jan and Stephen McDougal
McDowell Family Trust
Renee McElveen
The McGraw-Hill Companies
George and Dorothy McLaughlin
Estate Of Sybil Cooper McLeod
Elizabeth Meaney
Medco Health Solutions Inc., and
Medco Health Affiliates
Aida L. Mei
Mennonite Foundation
Merck Partnership For Giving
Janice Messina
Metroplex BB Mgt. Inc
Jerry Metz
MicroSemi Co.
Microsoft Matching Gifts Program
Darya Miller
Paul Miller
Lois B. Miller
Gordon H. & Karen M. Millner Family
Foundation
Moore Stephens Tiller LLC
Ken Morano
Diana and Willie Moss
Motorola Foundation
Jerald Mundell
Munlake Contractors, Inc
Kevin Murphy
Tim Murphy
Zina Murray
Jeffrey Myers
National Foundation for Human
Potential
NBT Bancorp
Marion Necatera
NER Construction
John and Theresa Newsholme
Newsholme Financial Services
Doris and Robert Niles
Joshua Nixon
John R. Nooncaster
NPG Foundation
Jean Oelkers
Steven D. Oppenheim
Lanny and Camille Outlaw
Palo Alto Medical Foundation
Dianne L. Pandolfi
Michelle Pandolfi
Rosalind Papaleo
Sina Passarelli
Torin and Natasha Pavia
Lloyd W. Pedersen
Paul E. and Jacalyn A. Pepperman
Tina and Joe Perri
Jill K. Petitto
Melinda Pettit
Sacha Phillip
Jennifer Phillips
Pima Credit Union
Harold Plack
Polk Family Charitable fund
POMCO Group
Carol Porcino
Frank R. Postma
Frank and Denise Quattrone Foundation
John and Janice Quinn
Kimberly Pires
R.S.P. & Associates
Todd Rainey
Estelle Randolph
Vandana Rao
Raynaud’s Scleroderma Support Group
Rosemary W. Reeves
Fred and Ann Reif
Edith Diane Reynolds
The Ridgeway Family
Phyllis and Edward Riegel
Riggs Oil Company
Jane H. Risolo
Katie and Ross Ritto
Mike and Annette Robbins
Robert Norris Charitable Fund
Frank and Jackie Robinson
Paul Rom
Serena L. Roman
Ronald P. Bordeau Contracting
Ira and Judy Rosenberg
Rosenson Family Foundation
Marvin Rubin
Sagamore Plumbing & Heating
Sage Foundation
Lou Sans
Peter Scheid
Tomasina Pia Schiro
Nick Schulte
Schwab Charitable Fund
Scleroderma & Raynauds Treatment
Center, North Shore LIJ Health
System
Scleroderma Association of British
Columbia
Jack Seagraves
Seaward Investment Management
Scott E. Shaffer
Ellen Haug Shannon
Dr. Lee Shapiro
Betzi and Jim Sheff
The Estate of Edna R. Short
James Skovron
Mr. and Mrs. Larry M. Smith
Nancy and Michael Sokil
South Bay Hand & Upper Extremity
Center
Jennifer Stanco
Rachel Stempel
Sharon Sternheim
James and Laurel Stevens
Richard W. Stewart
Janet Stucky
Stupell Foundation Inc.
Danielle Sucich
John Tahtabrounian
Martin E. Tanzer
TCAA, Inc.
TD BankNorth
Ten Count Farm
William Thompson
Heather Tielens
Toolan Family Foundation
Sarah Scott Tornes
Toyota Financial Services
Toyota Motor Sales
Trico Foundation
The Turan Family Foundation
University of Connecticut Foundation
United Way of Dane County
Valassis Giving
Charlene M. Vasquez
Richard and Joe Ventura
Verizon
Charles E. Victor
Renee Villela
Paul and Debra Vogt
Peter B. Walker
The Walsh Foundation
Patricia and Kevin Waszmer
Alyssa Waters
Joanie and Robert Weick
Mrs. Nancy Wempe
Joseph Werner
Western Nebraska Community College
Westroads Medical Group, P.C.
Joe and Arline Wetter
Michael Wicnienski
Zena Wiener
Stephen A. Williams
Brett and Kristen Wilson
Robert and Susan Wislow
Edwin & Shirley Woldar Family
Foundation
Women’s Issue Committee, NYS
Corrections, Clinton HUB
Andrea Youndt
ZBI Employee Allocated Gift Fund
$500 – $999
A & B Foundation
A & J Paxos Inc./Country Coffee Shop
Nancy and Steve Abraham
Charles and Glenna Beckman
Janet Abrahm
Mr. and Mrs. Donald A Belgrad
Ace Sandblast Company
Donald Belgrad and Dorothy
Active Network
Schnadig
Kent and Julie Adams
D. Theodore Berghorst
Patrice Adams
Bergman Incentives, Inc.
Rus Adams
Thomas G. Berkery
Advantage Communications Group
Charlotte Berkner
Harold and Barbara Berry
Bruce and Millard Affleck
Marina and Tina Maria Birch
Mary and Steve Albright
Robert S. Birch
Danielle, Liz and Ron Alexander
Joseph and Nancy Blackstock
Morag M. Alexander
Mark J. Bluth
Donald E. Alkinburg
Laurie Bolton
Lori L. Alkinburg
Brian Bousley
Allstate Giving Campaign
Mr.and Mrs. Curtis Boyd, Jr.
Almaden Physical Therapy, Sypriya
Michael Boyd
Maniar
Richard W. Bozel
Altman Family Foundation
tEXT hERE.
Paul R. Brady
Jennifer Amendo
David Brainard
American Risk
Ellen and William Brainard
Anadarko Petroleum Corporation
Harry Brandt
Mark and Teresa Anderson
Rebecca Brechko
Michael C. Anderson and Vicki M.
Dana M. Brewer
Shaw-Anderson
Joi Britt
Arbitech LLC
Dena and Boruch Brody
William and Rosemary Arnold
Maureen and Burrow Brooks
Roger and Paulette Aurelio
Vic and Linda Brown
AXA Foundation
Jan E. Brown-Chaffen
James Babcock
Sue Brucker
A. Bailey Plumbing and Heating Corp.
Robyn L. Burdick
Baldwin High School Key Club
Danielle Caccavale
Carol Baldwin
Maryann Caliri
The Bank of New York Mellon
James and Katherine Calkins
Community Partnership
Cheryl Cammarata
Tina Barbaro-Polis
Cardinal Health Foundation, Inc
Kathleen Barclay
Carolinas Chapter Of NCRS
Jennifer Bard
Antonino Cartelli
Tara Barker
Christine Cassidy
Susan Barney
John L. Castleman
Gary Barron
Jonathan Cerrata
Mary Jo Basile
Ron Chapman
Stanley Becchetti
Scleroderma Foundation 2010 Annual Report
|
25
Scleroderma Foundation 2010 Honor Roll of Donors
Kathryn Charles
Jamianne Cheneski
Cherokee Brick & Tile Company
Cherry Creek, Inc.
Anne Christie
Kate Chura-Lynch
John M. Cioffi
J. Howard Clark
Charles Clarke and Vanessa
Balbec Clarke
Doug Clarke
Cathy Engle
Dr. Philip Clements
Donald and Theresa Cline
Jeanne and Rick Cline
Matthew J. Cohen
Morrie Cohen
Tracey Cohen
Terry R. Cole
Communities Foundation of
Texas
Constellation Brands, Inc.
Hal Coppinger
John Cortinas and Family
Cross Country Group
Crowley Volkswagen
CSR Real Estate Services
Ralph Curriera
D & L Rentals, LLC
D.A.V. Aux Inc., Unit 84
David and Stephanie
D’Arcangelo
James and Bonnie Davidson
Michael Dawley
Haitham Dawwas
Lisa DeGaetano
Riccardo and Lisa DeGirolami
Rose Ann DeHaven
Shennen A. Dell’Anno
Kevin M. and Linda A. Dempsey
Lauren Denney
George A. Depasquale, Jr.
Estate of Betty P. Dietrich
Diversified Construction Group
Robert Don
Dr. Brian Drucker
Drydock Marine, Inc.
Tom DuBois
Joyce A. Dunkle
Gail Duty
Tony and Sarah Earley
Jim and Theresa Edington
Carolyn Edwards
Jonathan Eisenberg
Susan and Timothy Endreson
Demetria Enright
Beatrice Epel
Stan Eskridge
Kevin J. Leary
Fairways at Lake Ridge Women’s Club
Deborah D. Fehringer
Barry and Susan Feinberg
Helen C. Felice
Genevieve A. Felix
Mr. and Mrs. Bruce Fischer
Crystal Fisher
Helene Flapan
Barbara Flynn
FM Global Foundation
William and Joanne Formon
Irene Fox
Fraternal Order of Police, Chicago Lodge #7
Harold Fried
Robert and Judith Frinier
Dr. Daniel and Elaine Furst
Helene Gagnon
John J. Gallagher
Anne Garland
Brandi Garnett
Christine Garrant
John H. Garrett, Jr.
Gary’s U-Pull It, Inc.
Bill & Melinda Gates Foundation
Matching Gifts Program
Rod E. Gauchat
Lisa M. Gearen
General Electric Foundation
Gentle Dental
Lance Geyer
Giant Foods
GlaxoSmithKline
James Gleason
Glusman, Broyles & Glusman, LLC
Jan Gnall
Goldman & Sherman Families
Lisa J. Goldsman
Joe Gonzalez
Bill and Joi Goodbread
Allen Gorrelick
Diane Gottlieb
Steven and Carolyn Grantz
Harold Grasman
Charlotte B. Gregory
Richard Grossklas
Mr. and Mrs. Richard A. Guinta
Allen Hagadone
William M. Hale
Beatrice Halstead
Theresa Hanrahan
Craig Hansen
Jerry Harnik
Bernadette Harrison
Kathryn and Jeffrey Hart
Jessica Hartgraves
Amy Hartig
Ann and W.G.Hays
Healthmark Foot & Ankle
Associates, P.C.
Brent Heilig
Kelly Heisey
G. Michael and Joann W. Heller
Sherry Hellweg
John Helm
Robert E. Helpern
Janet R. Hemley and Family
Melissa C. Hicks, CRNA, Inc.
Jeff G. Hoen
Homan & Stone, Attorneys At Law
Ron Hopkins
Debra Houghton
Billy Howell and Family
Susan Huber
Maria Hughes
Mary Hughes
Jennifer Hull
Hyperbaric & Wound Management, LLC
Lena Iacono
IAFF 4323
IESI Corporation
IGG America
Toni-Dara Infante
Karen Ann Ingwersen
Intelligent Women Club
J. J. Bafaro, Inc.
J.C. Printing
Sue Jacobson
Judith V. James
Tiffany Jamieson-Ward
Heather Johnson
Sylvia J. Jones
Michael A. Jones
Sally Kahn
Andy Kaiser
Kappy’s Fine Wine & Spirits
Katarsky Family
Dan Katcher
Marc Kawakami
Cynthia Keats
Ron Kegerreis
Larissa Kesala
Suzanne Killea
Christine King
King Electrical Contracting
Knights of Columbus #9667
Michael and Lisa Koewler
Wendy A. Kopchak
Crystal R. Kornblau
Craig and Sara Kuykendall
L.A. Chapter of the CPU Society
Theresa Lachman
Lynda Lackups
Camille Lake
Maurice Burt Lampl
Edward Lassiter
Mike Laurence
Eric and Sandi Lawson
Peggy and Mike Leavengood
Bruce Leboff
Frank and Ellie Leboff
Ronald B. Lee
David and Lois Leeds
Edward Leiber
Dr. Bradley M. Lemberg
Rob Lemen
Jeffrey Lennox
Marilyn H. Levett
Mr. and Mrs. Mark and Linda Levine
Monica Libby
Liberty Glass & Metal, Inc.
Litwinka & Company
Carla J. Lobner
Elizabeth and John Lockwood
Carmen Lopez
Donna and Steve Loraine
Lubrizol Foundation
Lynn and Mike Lullo
Nicholas and Karen Llygizos
Cheryl Lytle
Elizabeth MacLean
Debbie Macomber
MAFCU Federal Credit Union
Michael Majerus
Dr. Bonnie Maltz
Fred Mandrick
Robert B. Mangum
Richard and Michelle Manson
Marblehead Savings Bank
Mr. and Mrs. Jerry Marsalli
Patricia Martin-Hillers, The Martin Group
J A Tony Martinez
Vincent J. Martorana
Bob McCloskey, McCloskey Insurance
Hugh T. McCormick
Suzi and Doug McCraw
Nancy McDonald
Mr. and Mrs. William McGuire
Ben G. McLauchlin
Holly Meller
Mr. and Mrs. Jeffrey Meltzer
Alfonso J. Mercurio
Lynn Merel
Megan Mergener
Sandra Messinger
MetalCut Products
Benjamin Meth
Metro Race Forum
Donald Michaelian
Midlands State Bank
Deon Midyett
Catherine M. Miller
Janette Miller Putnam
Chris Miller
Gary and Janell Monetti
Thomas Morano
Susan Morano
Morgan Stanley
Sandra Morrison
David and Linda Moscow
Natalie Murdolo
Michael Murphy
Vincent J. Murphy
Alan and Amy Musikantow
Richard S. and Winifred B. Myrick Fund
Glenn Nakata
Madeline E. Quarto
Tony Namvar
Verne and Judy Rainey
Shirley Nardiello
H. Lewis Rapaport
William A. Nassal
Dr. Ted and Brenda Rappaport
Ralph Neusawer, Jr.
Bruce A. Rasmussen
New York State United Teachers
Juliann Clark
Nanci Newman
Jessica M. Remza
Virginia M. Remza
David E. Newman
Thomas C. Renninger
James G. Nicholas
Arthur Resch
Noble Davis Consulting, Inc.
Craig and Victoria Reynolds
Now Care LLC
Sharon A. Richards
Don and Geri Nunes
Charles Richardson
Kevin Obymako
Robert Richardson
De Etta O’Connell
Brian Inniger
Ann B. O’Connell
Robert J. Riggs
George Olin
Joseph and Wendy Rinchiuso
Theresa Carter
Robinson’s Ace Hardware
James O’Neil
tEXT hERE.
Cait Rohme
Mary Ann O’Neil
Shannon and Ramon Romo
Stuart Orsher, M.D.
Steve and Chandra Rowley
George and Loretta O’Shea
Judy Rucinski
TerryAnn O’Sullivan
David Russell
Ozark Sportsmens Club
Thomas Ryan
P.H. Mechanical Corp.
Donna Sack
Barbara Padilla
Safeway, Inc.
Joseph Palumbo
Jerry Sager
Jay and Barbara Peak
Wanda Salcedo
Pedersen & Houpt
San Jose Water Company
Louise Penny
Ruth Saphirstein
Penske Corp.
Saul Ewing LLP
Cheryl Peters
Joanne Scheller
Albert and Noreen Platten
Pleasant Valley Lions Club Charities William A. and Mary L. Schetter
Angie Schmitz
Bryan Plude
Kenneth M. Schneider
Stephen Porter
Robert Schneider
Robert and Georgia Pourchot
Pearl Schultz
Progressive Tool Co., Inc.
Linda A. Sciuto
Joan Provizer
Michael Scully
The Prudential Matching Gifts
Mark Seiler
Program
Andrew Semons
John Purcell
Alycia Senisi
Q.F.D. of New York Inc.
Scleroderma Foundation 2010 Annual Report
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27
Scleroderma Foundation 2010 Honor Roll of Donors
Philip Sfreddo
William Shaffer
Shamrock Lawn & Landscape
Mark D. Shelnutt, P.A.
Steven P. Shepard
Constance Shiaras
Silver Line Building Products
Jill Simon
Anita Simons
S-K Partners Ltd.
Steven Skehill
Lori and Joseph Sledzik
Stacie Slowiak
Joseph R. and Denise J. Smith
Kathy Ublasi
Phyllis Sneed
Solamere Homeowners Association
Sorbara Construction Corp.
Sovereign Bank
Shirley Spaseff
Sports Medicine South, LLC
Rebecca Stagg
Nancy Steinhaus
Kimberly R. Stephens
Robert Stevenson
Stillwater Fasteners LLC
Kathleen and Robert Stockwell
J. Stratton
Patricia and John Sully
Joan F Sussman
James Swartz and Family
Mark and Sandra Taylor
Taylor Executive Radiator Service
James J. Tedesco, III
Telephonics Corporation
Karen Tenenbaum
Texas Health Presbyterian Hospital
Thompkins Industries, Inc
George Thompson
Bruce Thorvig and Jemie Heiman
Thorvig Gary and Lee Ann Thurston
Catherine Tomman
Jennifer L. Torneden
Bill Towhey
Dennis and Doreen Towhey
Tracy Zweig & Associates, Inc.
J.H. Treiber
Jeanette Trepp
Stephen and Janine Triano
Triple “S” Services Inc.
Linda and Bob Truman
Carolyn Tuomala
Amanda L. Turner
Umberto’s of Wantagh
Fermin Velasquez
VerityPoint LLC
Verizon
Donna and Allen Villanueva
Vision Graphics
Visions Federal Credit Union
Visteon Corporation
Lisa Vong
Barry Walker
Robert and Deborah Wallin
Walmart Stores
Clarice M. Warrick
Michael S. Weiner
Jeff Weinstein
Jill Welch
Wells Fargo Community Support
Campaign
Bob Westbury
Glenn Whiteman
Martha Wiebers
James Wiley
Harry W. Williams
Steven P. Wirth
Camille Wojtaskiak
Jay Wolfe
Scott Wolfe, MD
Lisa Zaccagnino
David J. Zammiello
Z-Coil
Randy Zechman
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, Director of Development and
Research, at (800) 722-4673 or tsperry@scleroderma.
org. We will correct our records immediately.
Scleroderma Foundation 2011 Financials
Unrestricted
Revenues, gains and other support
Contribution revenue
Bequests
Special events, net
Investment income
Chapter revenue
Other income
Net assets released from restrictions:
Satisfaction of program expenses
Total revenues and other support
Net realized and unrealized
loss on investments
$1,513,431
830,954
203,718
45,446
2,440,649
20,528
Total expenses - program services
Expenses - Supportive Services
Fundraising
General and administrative
Total expenses - supportive services
Total expenses
465,363
10,036
400
63,714
-
-
-
2011
Totals
Contribution revenue
$1,978,794
$840,990
$204,118
$109,160
$2,440,649
$20,528
Speccial events, net
5,934,141
(399,902)
-
5,594,239
75,827
-
849,686
-
6,443,925
(324,075)
1,605,399
3,279,647
-
-
1,605,399
3,279,647
4,885,046
-
-
4,885,046
116,250
335,882
-
-
116,250
335,882
452,132
-
-
452,132
5,337,178
-
-
5,337,178
-
1,106,747
Change in net assets
1,370,822
Net assets, beginning of year
5,115,822
1,697,000
1,542,675
8,355,197
$6,486,644
$1,432,925
$1,542,375
$9,461,944
Net assets, end of year
Revenue
(264,075)
Bequests
Investment income
Chapter revenue
Other income
(879,415)
6,708,000
Expenses - Program Services
Research and education
Support and advocacy
Permanently
Restricted
879,415
773,859
Total revenue, gains, and
other support
Temporarily
Restricted
Net realized and unrealized
Research and education
Support and advocacy
Fundraising
Expenses
Scleroderma Foundation 2010 Annual Report
|
29
National Leadership
Board of Directors
Joseph Camerino, Ph.D., Chair
Carol Feghali-Bostwick, Ph.D., Vice Chair
Cos Mallozzi, Treasurer
Mary Blades
Marie Coyle
Kerry Hall
Lee Roy Jones
Robert Kacick
Greg Marion
Robert Slappey
Medical Advisory Board
National Staff
John Varga, M.D., Chair
Frank Arnett, M.D.
David Badesch, M.D.
Carol Black, M.D.
Philip Clements, M.D.
Michael Ellman, M.D.
Vincent Falanga, M.D.
Daniel Furst, M.D.
Barry Gruber, M.D.
Sergio Jimenez, M.D.
Maureen Mayes, M.D., M.P.H.
Janet Pope, M.D.
Arnold Postlethwaite, M.D.
Lewis Rubin, M.D.
Richard Silver, M.D.
Virginia Steen, M.D.
Victoria Werth, M.D.
Fredrick Wigley, M.D.
Robert Wise, M.D.
Robert J. Riggs
Chief Executive Officer
Mary Ann Berman
Office Assistant
Sue Bourn
Director of Finance and Administration
Ryan Burrill
Programs and Services Coordinator
Kerri Connolly
Director of Programs and Services
Shenna Gianetta
Executive Assistant
Laura Koumarianos
Accounting Assistant
Linda Norris
Database Administrator
Christina Relacion
Communications Manager
Tracey O’Connell Sperry
Director of Development and Research
Anne Sweeney
Chapter Coordinator
Maureen Zuluaga
Database Administrator
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 countr y.
C H A P T E RS B Y S T AT E
California
Northern California Chapter
Southern California Chapter
Greater San Diego 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
Greater Chicago Chapter
Maine
New England Chapter
Maryland
Greater Washington, D.C. Chapter
Oregon
Oregon Chapter
Michigan
Michigan Chapter
Western Pennsylvania Chapter
Massachusetts
New England Chapter
Minnesota
Minnesota Chapter
Missouri
Missouri Chapter
New Hampshire
New England Chapter
Nevada
Nevada Chapter
New Jersey
Northern New Jersey – Tri-State Chapter
Southern New Jersey – Delaware Valley
Chapter
New York
Tri-State Chapter
Ohio
Ohio Chapter
Oklahoma
Oklahoma Chapter
Pennsylvania
Eastern Pennsylvania – Delaware Valley
Chapter
Rhode
tEXTIsland
hERE.
New England Chapter
South Carolina
South Carolina Chapter
Tennessee
Tennessee Chapter
Texas
Texas Bluebonnet Chapter
Vermont
New England Chapter
Virginia
Greater Washington, D.C. Chapter
Washington
Washington Evergreen Chapter
Wisconsin
Greater Chicago Chapter
Scleroderma Foundation 2010 Annual Report
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31
Scleroderma Foundation
300 Rosewood Drive, Suite 105
Danvers, MA 01923
800-722-HOPE (4673)
www.scleroderma.org
www.facebook.com/sclerodermaUS
www.twitter.com/scleroderma