SCLERODERMA FOUNDATION ANNUAL REPORT 2014

F i n a n c i a l R e p o R t J u l y 1 , 2 0 1 4 - J u n e 3 0 , 2 0 1 5

SCLERODERMA FOUNDATION ANNUAL REPORT 2014

S C L E R O D E R M A F O U N D A T I O N A N N U A L R E P O R T | 3

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.

4 | S C L E R O D E R M A F O U N D A T I O N A N N U A L R E P O R T

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.

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.

In this Annual Report, you will have the opportunity to look back at the activities and achievements that took place in FY 2014. You’ll also see the financial report 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.

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.

Chair, Scleroderma Foundation


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 Founda-tion, for your commitment to its mission and for being part of its future.

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 continued to raise awareness on several fronts. June is designated Scleroderma Awareness Month 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. Unfortu-nately, we cannot list every donor and donation, but please be assured that every dollar given counts and is important.

Only those who see the invisible can do the impossible!


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. Today, the Foundation has grown to include a network of 22 chapters and 160 support groups throughout the United States. Under the guidance of a 10-person Board of Directors, a three-fold mission of support, education and research drives the organization. A full-time staff in the National Office, based in metro Boston, manages daily operations.

SUPPORT

With the help of its chapters and support groups across the country, the Foundation connects people living with scleroderma. These groups host patient education seminars to inform those affected by the disease, including patients, caregivers, family members and friends. Thanks to the work of the chapters and support groups, individuals living with scleroderma are welcomed into a safe, positive and inspiring environment to learn more about the disease and hope for a better future. Additionally, the Foundation offers a toll-free support line with a dedicated staff to answer telephone inquiries and provide instructive materials and resources. EDUCATION

Education has always been a vital piece of the Foundation’s mission, and it remains committed to offering high quality resources to patients, family members and the public to foster better understanding of scleroderma and the tools available to help manage the disease. Each year, chapters and support groups host a number of patient education events, fundraisers, galas, walk-a-thons and seminars to raise awareness about the disease. In addition, the National Patient Education Conference serves as an annual retreat for scleroderma community members, health care professionals and others who wish to collect the latest information about scleroderma. The annual conference provides a unique opportunity for people living with scleroderma to connect with others and share their experiences in a supportive environment. Publications, such as the “Scleroderma Voice” and the weekly online “eLetter,” keep members informed about the most recent scleroderma-related news.

MissionOur Joint Committment to Those Affected by Scleroderma

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 investigators to help advance their work to help unlock the clues to the scleroderma mystery.

AWARENESS AND OUTREACH: TOGETHER WE ARE STRONGER

Sharing the Scleroderma Story

Many scleroderma patients and their supporters know that June is Scleroderma Awareness Month. People around the world make a special effort during the month and especially on, World Scleroderma Day – June 29th – to let others know about the disease and the obstacles patients face.

The Foundation joined forces with the Scleroderma Research Foundation and the Scleroderma Society of Canada to flex their social networks and reach people throughout the U.S. and Canada to help increase understanding of scleroderma.

The “Hard Word. Harder Disease.” campaign utilized Facebook, Twitter, and Instagram to help spread the word. The “Hard Word” theme acknowledges difficult obstacles we encounter when talking about the disease, such as pronunciation (hard), tissue condition (hard), and the many manifestations of the disease (harder).

Patient photos along with a variety of other images translated into compelling messages that showcased disease facts, heart-felt struggles and invitations to help educate others. Created by marketing firm, Brogan & Partners, the messages shared with our Facebook and Twitter followers proved a powerful summons to help. News releases and editorial stories sent to traditional and online media helped to get our message out to a new and wider audience.

We believe that the partnership between the Scleroderma Society of Canada, the Scleroderma Research Foundation and the Scleroderma Foundation has helped hasten the pace of increased understanding of scleroderma.


Our Collective SupportYour contribution helps the Foundation empower individuals living with scleroderma to access

supportive tools and resources so they can improve their quality of life.

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 Confer-ence 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.)

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

1 0 | S C L E R O D E R M A F O U N D A T I O N A N N U A L R E P O R T

Partners in EducationEducation 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 trade-shows. The Foundation hosted exhibits at the annual American College of Rheumatology (ACR), the Ameri-can Thoracic Society (ATS) and the Pulmonary Hyper-tension 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 Dermatol-ogy 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 Educa-tion 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 profes-sionals about the various manifestations of sclero-derma 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 sclero-derma nationally and internationally. The Founda-tions 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-

Thanks to your support, we were able to achieve several important

advances in educating the public further about scleroderma.

S C L E R O D E R M A F O U N D A T I O N A N N U A L R E P O R T | 1 1

tion about advances in research, articles from scholarly journals and more for the medical community.

The “Scleroderma Voice,” our quarterly magazine for Foun-dation 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.


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.


PartnersinResearch


The Foundation funded an

unprecented $2.2. million in

research grants in FY 2014 .

Administered by the Scleroderma Founda-tion’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 Collabora-tive 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 technolo-gies 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 genera-tion 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 interac-tions, 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 patho-genesis 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 pharma-ceutical 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 abnormali-ties 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 sclero-derma and has enabled the development of new therapies.

The Foundation extends its appre-ciation 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.

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.


2014 Research Grant Awards

Finding the Missing Puzzle Piece

The Marta Marx Fund for theEradication of SclerodermaDouglas Faller, M.D., Ph.D., Boston University School of MedicinePKC Inhibitors as Targeted Therapeutics for Systemic Sclerosis

The Mark Flapan AwardJMinghua Wu, M.D., Ph.D., The University of Texas Health Science Center at HoustonNew Insights Into Interferon Regula-tory Factor 7 (IRF7) and Its Role in Systemic Sclerosis

The Linda Lee Wells Research GrantSergei Atamas, M.D., Ph.D., Established InvestigatorBaltimore Research and Education FoundationThe Multifaceted Regulation of Lung Fibro-blasts by IL-33Arterial Hypertension

Monica Brown, D.O., University of Tennessee Health Science Center17,20 (OH)₂D₃ Mediates Antifibrotic Effects in Murine Models of Sclerosis

Megan Cooper, M.D., Ph.D., Washington University, St. LouisThe Role of STAT3 in Juvenile Scleroderma

Giuseppina Alessandra Farina, M.D., Ph.D., Boston University School of MedicineInnate Immune Modulation in SSc Fibroblasts by Epstein-Barr (EBV) Infection


2015 Research Grant Awards

The Marie A. Coyle Research GrantDavid Lagares, Ph.D Massachusetts General HospitalMatrix Stiffness Gradients and Fibro-blast Durotaxis in Scleroderma Fibrosis Progression

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 Linda Lee Wells Research GrantStephen Mathai, M.D.Johns Hopkins School of MedicineValidation of the Tricuspid Annular Plane Systolic Excursion as an Outcome Measure in Scleroderma-Associated PAH

Nezam Ibrahim Altorok, M.D.University of ToledoDNA Mehylation “Signature” in Systemic Sclerosis Fibroblasts and Endothelial Cells, and the Effect of Oxidative Stress on DNA Methyla-tion Profile The Mark Flapan Award

John Varga, M.D., Northwestern UniversityReduced Anti-aging Sirtuin in Ssc: Disease Biomarker and Therapeutic Target Elizabeth Volkmann, M.D., M.S.

UCLALong-Term Morbidity and Mortality Outcomes in Systemic Sclerosis-Related Interstitial Lung Disease

The Marta Marx Fund for the Eradication of SclerodermaJanet Elizabeth Pope, M.D., PhD, University of Western OntarioDevelopment of Systemic Sclerosis Subset Classification


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 SclerosisCollaborators: 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.


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


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 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 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 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. 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.

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 Sclero-derma Foundation is absolutely critical for discovering more effective treatments and an eventual cure.

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.


AdvocacyYour Voice Matters! The Founda-

tion’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 Depart-ment 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. Sclero-derma 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 Peer-Reviewed 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 willing-ness 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, Rose-mary Markoff and Suzy Bal-lantyne meet with a member of Senator Kirsten Gillibrand’s (D-NY) staff.

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.



Your Support Matters

The work of the Foundation would not be possible without our farsighted donors like you. Your philan-thropy 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 ProgramsThe 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.

With great need comes great opportunity. Thank you for your steadfast support. It makes our

work possible.


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 EffortsLong-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

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.


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 “ex-ceptional” 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 rat-ing 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 Navi-gator, this four-star designation reflects the commitment of the Scleroderma Foundation’s leadership to strengthening its overall operation, effectiveness and cost reduction practices.

Reprinted with permission from People Magazine


$ 50,000+

Actelion Pharmaceuticals US, Inc.Anonymous Fund of Triangle Community Foundation, Inc.Bayer HealthcareCombined Federal CampaignEstate of John H. CraigGilead Sciences, Inc.Estate of Virginia M. GuarinoKao Family Foundation New England Golf Classic Anonymous Donors

$25,000 - $49,000

Mr. and Mrs. George and Lisa Etheridge, Jr.Bill and Joi GoodbreadPaula and Roy MayNancy P. Shea TrustSouthern Wine and Spirits of America, Inc.United TherapeuticsSol and Tina Waxman Foundation

$10,000 - $24,999

Stacy BarronMichael BatzBethpage Federal Credit UnionEstate of Fran Batz Genentech Inc.Estate of Glendon L. GriffithHummer Winblad Venture PartnersCharles LawrenceBarbara MuscoEstate of George PulosMotorola Symbol TechThe Scott FamilyMichael Sheehan TrustThe Ladd J. and Jarmilla R. Vosahlik TrustKevin Weiss

$5000 - $9999

Anonymous (3)Danielle AsipBeta Sigma Phi Endowment FundBeta Sigma Phi/Northern CA CouncilMarlene Calverley

Antoinette AquinoAssociate Engineering CorpSergei Atamas, M.D.Nelson P. BallSuzy BallantyneJeffrey BarathGreg and Mary BarnesSusan BarneyEdward BarsocchiMargaret and Reginald M. BayleyJoe and Nelda BeaudCharles and Glenna Beckman and FamilyRichard A. Bell, M.D.June BenderThe Benevity Community Impact FundCraig, Melissa and Dennis BennerFran BernsteinBern BertscheCyndy and Craig BesselievreBeta Sigma Phi/ Camino Real California CouncilBeta Sigma Phi/ Mission California CouncilBeta Sigma Phi/ Pacific California CouncilBeta Sigma Phi/Central CA CouncilBeta Sigma Phi/Far Northern CA CouncilBeta Sigma Phi/Orange Coast California CouncilBeta Sigma Phi/Southern CA CouncilBobby BindertJim and Beverly BirdJudith BirnbaumChristopher BirosakBill and Mary Blades Alan and Desiree BleamBNY Mellon Community PartnershipLydia BorasTheresa BorgHannah BosePaul BoykasJoanne F. and Robert BradyCatherine BramhallSheila Brayman BorgeseKatherine BrewsterMichael and Elaine Lasnik BroidaCarla BrownAllan BrownieBruce and Judith BrunsonGabby BurnsErin CalevOlga Casarella

Joseph P. Camerino, Ph.D. Antonietta ChiocchiCommunity Foundation for Southeast MichiganConstellation Brands, U.S. OperationsLindsay CowanYvonne CrandallCrane FoundationDr. and Mrs. James and Pam DukeValentine FentiDenise GesualePeter and Carol GoldmanPatricia P. GreenhoodSima IngbermanLynne and Robert KellerPeter KellnerMarc KriegerSaul and Eleanor Lerner FoundationEstate of Joan LindemanThe Reva and David Logan FoundationCos Mallozzi and Ronni Shulman Bill and Cyndy MartinFood 4 LessDale and Ayako OkunoSina PassarelliEstate of Ann RogersSchwager, LynMr. Steven J. SeidemannJohn and Patricia TishlerTed Valpey, Jr.Kristopher Williams

$1000 - $4999

Anonymous (10)Donna L. AbbruzzeseAdvantage GroupThe Ahonen FamilyKen AldridgeRoni AlexanderAll Good Pest ControlClarence W. Allen, Jr.Allstate FoundationAlvarez Educational Foundation, Inc.M.J. Amaro - Emerson - ClosetmaidAmerican Autoimmune Related Diseases AssociationLeigh Ann AndersonAnn Grovenstein-Campbell

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.


Murtaza Cassoobhoy, M.D.Linda and Richard CauteroJoel ChermanThe James D. and Veronica E. Chesterton Family FoundationChi Omega SororityPaul ChildsVernon ChildsJanet ChinelliMarty CiszonZachary L CiszonMr. and Mrs. Joseph ClancyArissa ClarkMr. and Mrs. Charles ClarkePhilip J. Clements, M.D.Laura ClokeLeslie and Jules CoganHarvey CondonHarvey CondonChristopher J ConroyMary ContadinoPeter and Emajean Cook FoundatonMelissa CoppolaScott CornellRosie CorteseJames M. CostelloCounty of Los AngelesCovey Gant FoundationThe Coville Triest Family FoundationPreston E. Cowie

Marie A. CoyleRuss CranswickAlvin and Angela CrowlDonald J. CurtisDaniell Family FoundationDaniels Family FoundationAmanda DaviKen DavidsonMs. Geneva G DavisArmand De PaloAmelia B. DeGeisoMrs. Amelia B. DeGeisoRobert and Eleanor Demple Family FoundationWilliam and Katharine DennisJoann DeRoseMatthew DevinsMr. Joseph J. DeVirgilio, Jr.John and Mary DeystCora DiFioreJohn T. DillonJohn K. DonohueBrian DowneyDr. Gary Levengood, Sports Medicine SouthRobert M. and Nancy DunnCece and Denis DwyerMr. and Mrs. Robert J. DwyerMr. and Mrs. Steven DyasMark R. Eaker, M.D.Susan EhrlichThea Ellesin-Janus

Mr. and Mrs. Edward A. ElliottStephen and Michelle ElrodRobert EnglebachMr. Ted EnglishEnterprise Holdings FoundationAnnette M. EppsStan and Denise EskridgeJames EvansBarbara EverettRobin FaganRobert FairfieldSophia FalusiCarol Feghali-BostwickChristina FerrariFidelity Charitable Gift FundLarry FieldAlison FischerCrystal FisherRobert “Harper” FraleyMr. and Mrs. William C. FredericMelinda C. FreyMonte FriedkinNneka FritzFusco, Brandenstein and Rada P.C.Linda GarardLisa M. GearenPat and Pete GerardiGlamorise Foundations, Inc.Plasma Services GroupSara and Andrew Gledhill

Roy Kylander, MHUSAMr. and Mrs. Herbert A. LampertLand Baron Abstract Company, Inc.David and Lois LeedsDr. and Mrs. George LeopoldLinda LevineMr. Mark LevineFred and Julie LienemannLighthouse Christian SchoolMark LindstromFilomena LoRussoJohn LoughnaneWilliam LudelLyda HillSandee and Michael MaasJeff MaceElizabeth MacLeanDr. Thomas and Lan MahonBetty MallonJane M. ManciaMarathon Oil Company Matching GiftsLawrence and Nancy MarcusGreg MarionRosemary MarkoffWayne L. MartinRobert and Kira MatonMr. and Mrs. Robert MayThe June and Cecil McDole Charitable FundMike McIlhonJohn McNamaraLisa MeaneyAida MeiEdward P. MeissnerMercedes Benz USAMeritor, IncMetro BankJustine M. Metz FundLois B. MillerPhyllis MillerGordon H. and Karen M. Millner Family FoundationConnie Jean MonroeKaren MoranoThe Morningstar FoundationBank of AmericaMichelle MorrrisonMorton Revocable Living TrustKevin MurphyMutual Electric CompanyJack and Marianne NapoliMaria NarvaezNational Christian FoundationNational Philanthropic TrustNBT BancorpRose NeahrRichard and Pat NelsonTameka Nelson

Network For GoodNew Jersey LabsNew York State AFL-CIONewburgh Brewing CoNewsholme Financial Services, Inc.John NiemiNike Inc. And AffiliatesChristine NimsDean and Marcia NimsJan NittiElizabeth NolanSister Mary Rose NoonanJohn R. NooncasterC. Neil and Carolyn S. Norgen FoundationRobert Norris Charitable FoundationTom NorthrupIlene, Ava and Jay NusblattNuveen Investments Mayra Oberto-MedinaAlice OkunoRandall Oliver, Smart and FinalRoy OlsonTimothy M. OsbornDianne PandolfiMichelle PandolfiDavid B. ParkerParkway South Junior Patriots Basketball IIThomas A. PawloskiPenn MedicinePenske CorporationJackie and Paul PeppermanTina and Joseph PerriChris and Melinda PettitJennifer PhillipsSusan PiercePJM InterconnectionNoreen and Albert PlattenFrank PostmaLori PresleyProgressive Casualty Insurance Co.Michael PurcellJames PurvisQuattrone FoundationAnnette RahnVandana RaoH. Lewis RapaportRosemary W. ReevesRelax The Back CorporationRender Family FoundationEdith Diane ReynoldsTheresa RiceRiggs Oil CompanyJane RisoloRobertas Tuesday GirlfriendsFrank H. RobinsonMichael Rockoff


Debbie GoetzFelice GoldJustin and Sylvern Goldman FoundationEric GoldsteinAllen GorrelickEric GoschGeorge GottesmanClare GregoryHarriet H. GutknechtKim HallCheryl Hanlon-MinaraHarbour Mechanical Corp.Mr. and Mrs. Robert HardmanJoe HarrisonJean HartmanPatrick HayesHayman Studio Commercial PhotographyHeenan Agency, Inc.Heenan Storage, LLCMr. and Mrs. John HeilalaHelen Kay Charitable TrustMs. Robin HornHospital for Special SurgeryHoughton, Whitted and Weaver, PC, LLORussell HoustonBetty C. HughesAnna HullIBM Employees Service CenterJames ImperDMH IngredientsSteven IrlbeckFred JacksonLinda JacksonKatayun JaffariWendi JamisonWendell N. Jarrard Foundation, Inc.Jersey Strong Foundation Inc.The Jersey Strong FoundationJoe and Cindy Goldberg Family FoundationJoe and Kay Calvanese FoundationRosa JohnsonJessica L JonesLee Roy JonesSally and William KahnEstate of Natalie F. KaneCheryl C. KatcherStanley KaufmanDaniel KeatingBrian KimEileen Kimbell-MeaneyEmily KingMonte and Janice KleinJoshua M. KornJohn and Patricia KozaKPMG Community Giving CampaignNancy Krudys

Paul RomRosenson Family FoundationMarguerite RosiBethany S. RossThe Rotary FoundationJohn and Janis RuanLita RudyGeorge and Sharon RunnerFreda B. Runyon FoundationNorton SarnoffPam S. and Sal SaundersBill SavageGlen SchneiderRobert P. SchneiderNick SchulteKaren C. SchumacherSchwab Charitable FundScleroderma and Raynauds Treatment Ctr of the North Shore LIJ Health SystemSharon and Scott SeilerDawn SelgDan and Margie Sena, Daniels CaféEllen Haug ShannonBetzi SheffMichael T. Sheehan Family TrustMarilyn SibleySidney and Beatrice Albert FoundationTheodore L. SingletonJames W. Skovron

Robert SlappeyAnn M. SmithNancy SokilMichael Sperling, Rok Acquisitions, LLCSassy StealsNancy SteinhausRachel StempelSteve StittSylvia StouchJanet StuckyGary SylvanTaco Bell/City Different Enterprises, Inc.Ross Howard TaffKym TaylorThe Associated Jewish Charities of BaltimoreBill ThompsonWilliam ThompsonMs. Karen J. ThorpeThrifty Car SalesToolan Family FoundationJeffrey ToromorenoMelany K. TowerLinda and Robert TrumanTuran Family FoundationSherry TylerVerizon Foundation Virtual Parrot Head ClubVision GraphicsTom Votel

Pamela WaldersWalgreensMichael WalshJill WelchWestroads Medical GroupWestroads Rheumatology Associates, P.C.Martha WiebersWilliam Blair and CoBarbara Gene WinthropPaul WoldarBob R. WollenburgThe Women’s ClubThe Women’s GroupThomas and Tammy WrightAndrea YoundtYoung’s Market CoLorriann 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 protected].



FY 2014-2015 Financials

Scleroderma Foundation Fiscal Year Ended June 30, 2015

Temporarily Permanently 2015 Unrestricted Restricted Restricted 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

Voluntary Research Contributions 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

Net Unrealized Losses on Investments (130,287) (19,997) 0 (150,284)

Returned Grant Awards 113,091 0 0 113,091

Registration Fees 95,672 0 0 95,672

Bequests 61,635 0 0 61,635

Other Income 2,000 0 0 2,000

Net Assets Released from Restrictions 1,316,409 (1,316,409) 0 0

Total Revenue and Other Support 4,805,718 266,806 0 5,072,524

Expenses - Program Services:

Education and Support 2,723,769 0 0 2,723,769

Research 2,185,073 0 0 2,185,073

Total Program Services 4,908,842 0 0 4,908,842

Expenses - Supporting Services:

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

Total Expenses 5,627,220 0 0 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


63%

2%4%5%

7%

16%

3%Revenue

¢ Contributions

¢ Special Events, net

¢ Affiliate Dues

¢ Voluntary Research

¢ Investment Income

¢ Other Income

Expenses

¢ Education and Support

¢ Research

¢ General and Administrative

¢ Fundraising

4%9%

39%

48%


Chapters by State

CaliforniaNorthern California ChapterSouthern California Chapter

Colorado Colorado Rocky Mountain Chapter

ConnecticutTri-State Chapter

DelawareDelaware Valley Chapter

District of Columbia Greater Washington, D.C. Chapter

GeorgiaGeorgia Chapter

FloridaSoutheast Florida Chapter

IllinoisGreater Chicago Chapter

IndianaGreater Chicago Chapter

IowaHeartland Chapter

MaineNew England Chapter

MarylandGreater Washington, D.C. Chapter

MassachusettsNew England Chapter

MichiganMichigan Chapter

MinnesotaMinnesota Chapter

MissouriMissouri Chapter

NebraskaHeartland Chapter

New HampshireNew England Chapter

New JerseyNorthern New Jersey – Tri-State Chapter Southern New Jersey – Delaware Valley Chapter

New YorkTri-State Chapter

OhioOhio Chapter

OklahomaOklahoma Chapter

OregonOregon Chapter

PennsylvaniaEastern Pennsylvania Delaware Valley Chapter

Rhode IslandNew England Chapter

South CarolinaSouth Carolina Chapter

South DakotaHeartland Chapter

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. Please visit www.scleroderma.org for specif ic information on each of our chapters.

TennesseeTennessee Chapter

TexasTexas Bluebonnet Chapter

VermontNew England Chapter

VirginiaGreater Washington, D.C. Chapter

WashingtonWashington Evergreen Chapter

WisconsinGreater Chicago Chapter

National StaffRobert J. RiggsChief Executive Officer

Ryan BurrillPrograms and Services Coordinator

Kerri A. ConnollyDirector of Programs and Services

Shenna GianettaExecutive Assistant

Laura KoumarianosSenior Accounting Manager

David MuradNational Director of Chapter Relations

Linda NorrisDatabase Administrator

Jillian ScolaCommunications Manager

Irina ShuruyevaAccounting Assistant

Tracey O. SperryDirector of Development and Research

Maureen Zuluaga Senior Database Administrator


Board of Directors Joseph Camerino, Ph.D., ChairCarol Feghali-Bostwick, Ph.D., Vice ChairMary BladesBruce CowanJames EvansKatayun JaffariLee Roy JonesRobert KacickCos MallozziGreg MarionBill MartinRobert Slappey

Medical and Scientific Advisory Board oSteering Committee

John Varga, M.D., ChairMaureen 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 EmeritiFrank Arnett, M.D.Michael Ellman, M.D.Thomas Medsger, Jr., M.D.Frederick Wigley, M.D.

National Leadership

Scleroderma Foundation300 Rosewood Drive, Suite 105Danvers, MA 01923Tel: 800-722-HOPEwww.scleroderma.org www.twitter.com/sclerodermawww.facebook.com/sclerodermaUS

SCLERODERMA FOUNDATION ANNUAL REPORT 2014

Documents

Transcript of SCLERODERMA FOUNDATION ANNUAL REPORT 2014