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