2010 SCLERODERMA FOUNDATION ANNUAL REPORT
Transcription
2010 SCLERODERMA FOUNDATION ANNUAL REPORT
2010 SCLERODERMA FOUNDATION ANNUAL REPORT Support, Education, and Research A Message from the Board Chair, Joseph P. Camerino, Ph.D. Our Gateway to Hope The Scleroderma Foundation is dedicated to improving the lives of all people impacted by scleroderma. Our three-fold mission of support, education and research directly affects patients, family members and caregivers. Each day, we are a committed community that hopes to find the cure through revolutionary new ideas. Whether it is through our nationwide patient support programs, educational events or our annual research funding program, the Foundation works determinedly to ensure a brighter and healthier future for all those affected by scleroderma. Along with the help of our network of 23 chapters and 168 support groups, we continue to improve scleroderma awareness, education, advocacy and research. Throughout 2010, the Foundation expanded its patient programs and online services and funded more than $1 million in research grants. By focusing on the needs and concerns of those living with the disease, we provide new resources and materials to those impacted by the disease. In 2010, the Foundation enhanced its programs and services by further solidifying relationships with other nonprofits, donors and volunteers. The Foundation collaborated Photo shows representatives from the two original with Actelion Pharmaceuticals US, Inc. to develop a “Healthcare Management Binder.” organizations at the merger signing in late 1997. This tool is a useful resource for patients and caregivers to organize personal health information. With the continued support from our corporate partners, including Actelion Pharmaceuticals US, Gilead Sciences, PfizertEXT and hERE. United Therapeutics, we continued to develop and improve our outreach efforts and services to individuals throughout the country. The Scleroderma Foundation made strides in local and national advocacy efforts to increase awareness of the disease. The Foundation’s Advocacy committee, chaired by Southern California’s Executive Director, Brian Ross Adams, and many volunteer advocates worked diligently to garner support of the “Scleroderma Research and Awareness Act,” bipartisan legislation introduced in Congress in 2009 to increase research funding. In September 2010, the U.S. House of Representatives unanimously passed the bill. Even though it did not pass the Senate, our advocates are determined to promote scleroderma funding and awareness among our lawmakers on Capitol Hill. The Scleroderma Foundation is a highly efficient and fiscally responsible organization. Thanks to the unwavering support of the scleroderma community and the successful strategic management of funds, the Foundation completed its fifth consecutive year with a modest budget surplus. We continue to be a leader in scleroderma awareness, education and research funding. The organization plays a vital role to find a cure. I encourage you to read this Annual Report and learn more about the breakthroughs and contributions made on behalf of the Foundation, and the dedicated individuals, families and medical professionals that make such accomplishments and advancements possible. Sincerely, Joseph P. Camerino, Ph.D. Chair, Board of Directors Only Those Who See the Invisible Can Do the Impossible! Our Commitment to Those Affected by Scleroderma Mission Since 1998, the Scleroderma Foundation has dedicated itself to serving the needs of those affected by scleroderma. Through its three-fold mission of support, education and research, the organization has grown to encompass a nationwide network of 23 chapters and 168 support groups that host a variety of programs and services for individuals living with scleroderma and their families. For more than a decade, the Scleroderma Foundation has carried forth its mission to serve the needs of those affected by scleroderma. better understanding of scleroderma and the tools available to help manage the disease. Each year, the Foundation’s chapters and support groups host a number of patient education events, fundraisers, galas, walk-athons and seminars to raise awareness of the disease. The Foundation’s National Patient Education Conference serves as an annual retreat for scleroderma community members, researchers, physicians and others to collect new information about the disease. The event also offers a place for individuals affected by scleroderma to connect Through the Foundation, with others who share SUPPORT similar experiences. The Foundation people find a safe and Publications, such recognizes the need as the “Scleroderma welcoming environment to connect patients Voice” and the weekly with one another, and to share stories, online eLetter, keep works with chapters information, and most of members informed and local support about all the latest groups to facilitate all, inspiration and hope. scleroderma-related meetings, events and news. patient education seminars to bring together RESEARCH individuals living with the disease. Within In addition to fostering support and education, these various chapter and support group the Foundation is also a leading provider settings, people find a safe and welcoming of scleroderma research funding. As its environment to share stories, information, single-largest budgeted annual expense, the and most of all, inspiration and hope. The Foundation makes available an average of $1 Foundation also offers a toll-free support line million each year for scleroderma research (1-800-722-HOPE) with a dedicated staff to new and established researchers across to answer telephone inquiries, and provide the globe. Throughout the past decade, patients and their families with informative the Foundation’s research program has materials and resources. provided vital “seed” funding that has allowed investigators to advance and receive even EDUCATION greater amounts of funding from federal An integral aspect of the Foundation’s mission organizations such as the National involves providing education to patients, Institutes of Health and other entities. family members and the public to foster a OUR HISTORY The Scleroderma Foundation, Inc., was established on January 1, 1998, through a merger between the West coast-based United Scleroderma Foundation and the East coast-based Scleroderma Federation, each of which can trace their founding dates back to the early 1970s. The two organizations shared similar missions, goals, and programs, and partnered to fund medical research grants through a joint peer-review process modeled after those of the National Institutes of Health. Today, the Scleroderma Foundation has grown in size and scope to include a network of 23 chapters and 168 support groups throughout the United States. Following a three-fold mission of support, education, and research, the Foundation is guided by a dedicated Board of Directors and employs a professional staff to manage daily operations. An active Medical Advisory Board, comprised of distinguished researchers and clinicians in scleroderma and related fields, assists the Foundation in providing research and medical related information to patients and other interested parties. An independent Peer Review Committee, also comprised of leading medical experts, reviews, evaluates, and scores research grant applications to ensure that the Foundation funds are used to support the most promising research initiatives taking place across the country. Scleroderma Foundation 2010 Annual Report | 5 Serving Those In Need When dealing with an unpredictable and often deleterious disease such as scleroderma, support is essential to survival - support like those who attended the 2010 National Patient Education Conference received. Support The Scleroderma Foundation provides vital SUPPORT to all those affected by scleroderma through programs such as peer counseling, physician referrals and educational information. In 2010, the demand for our support services increased through calls to the Foundation’s toll-free helpline and requests for information about the disease. The Scleroderma Foundation strives to provide quality information and resources to individuals for support. The Foundation’s quarterly magazine, the “Scleroderma Voice,” provides news and information to patients, families, caregivers and health care professionals. The 2010 issues featured updates on the latest research, clinical trials and treatments, as well as articles authored by doctors and other health care professionals who specialize in scleroderma and related diseases. The “Scleroderma Voice” also provides practical tips to help patients cope, answers to medical questions from health care professionals and patient stories that highlight how people are living with the disease. The publication also serves as an important tool to inform Foundation members about fundraising efforts, public awareness campaigns and advocacy on Capitol Hill to help increase federal funding of sclerodermaspecific research through the “Scleroderma Awareness and Research Act.” It is essential that the scleroderma community have access to an informed and knowledgeable staff to help support the health and well-being of people living with scleroderma and their family or friends. Throughout 2010, the Foundation’s support staff received nearly 13,000 emails (sfinfo@ scleroderma.org) and telephone inquiries through the toll-free helpline (1-800-722HOPE) from patients, family members, caregivers and medical professionals who requested information or other resources. More than 700 scleroderma information packets also were mailed to newly-diagnosed patients eager for support and information. The Foundation also offers a variety of printed literature to accommodate the needs of patients and the greater scleroderma community. Twenty-nine brochures are available in three languages to help people better understand, manage and cope with the different manifestations of scleroderma including Sjogren Syndrome and Raynaud Phenomenon. The information has been reviewed by members of the Medical Advisory Board, and is available by request or at various educational forums, events and conferences across the country each year. The Foundation’s network of 23 chapters and 168 support groups work in communities across the U.S. to provide patients, their families, friends and caregivers with educational programs and meetings. For individuals who do not live near a chapter or support group, or who are unable to attend a support group meeting, the Foundation offers several different online services to connect such as Facebook and Twitter, or a 24/7 discussion board through Inspire (www.inspire.com.) Each website offers a supportive forum for advice, collaboration and encouragement. Local and national support groups, events and services sponsored by the Foundation’s National Office, chapters or support groups enable individuals affected by scleroderma to gain the necessary tools to battle the disease. Together, the Scleroderma Foundation hopes to support and enhance the lives of the scleroderma community by empowering individuals and communities to take action against the disease. Eunice Salter was only five years old when she developed symptoms of scleroderma. It took another 13 years before she received a definitive diagnosis. Sadly, it took another 10 years before Eunice ever interacted with someone else living with scleroderma. That all changed when Eunice received a 2010 Scleroderma Foundation scholarship to the National Patient Education Conference in Boston. “For years, my primary means of education and support had been the Foundation’s website. While it did provide a wealth of information, the conference showed me that I had underestimated the power and importance of face-to-face support and interaction. It was magical,” shared Eunice. “If I had to sum up feelings the conference evoked in me with one word it would be ‘hopeful’. I now feel rooted in the promise and hope of tomorrow thanks to the support the Foundation made possible. I saw others struggling and heard what they had been through. I met so many heroes that weekend. It made me realize that while I am not completely healthy, I’m still blessed. Those heroes put my daily struggles into perspective. They made me think about my future, and the many things I still want to accomplish.” “The Foundation was the catalyst that connected me with others.” Scleroderma Foundation 2010 Annual Report | 7 Better Understanding Knowledge provides hope to all those facing scleroderma. Learning more about the disease is essential to advancing the health and wellbeing of the greater scleroderma community. Education EDUCATION is a central part of the Foundation works to add new information on Foundation’s mission. It closely intertwines its website (www.scleroderma.org) to provide with awareness as it ensures individuals and vital information. The website received communities are better informed about the nearly 3.5 million page views in 2010. It is disease. The Foundation, a leading educational increasingly becoming a one-stop resource for resource in the U.S., provides information the entire scleroderma community around the and resources to patients, families, medical world. Scleroderma patients, family members professionals and the public. We offer a variety and caregivers also visit the Foundation’s of educational programming, published Inspire discussion board (www.inspire.com) literature and online tools. for helpful advice and resources 24/7. The Foundation continues to educate the Our chapters host patient education seminars entire scleroderma community through each year. In 2010, there were more than 50 educational events held, where attendees were online and traditional print publications. The weekly email newsletter, or eLetter, continues able to hear from some of the most respected to attract attention. More than 9,500 people scleroderma experts in the country, and subscribe to receive weekly updates that connect with other patients or caregivers. Each year the Foundation strives to reach out include helpful tips for patients and caregivers, research information and to health care professionals, more. “Scleroderma Voice,” especially physicians, at annual The Scleroderma a quarterly magazine for conferences and trade shows. Foundation continues Foundation members, In 2010, the Foundation to expand its outreach educates readers through hosted exhibits at conferences to everyone within the held by the American College disease’s community, as in-depth articles with well as those who may scleroderma experts, of Rheumatology (ACR), American College of Physicians not have heard the word caregivers and patients. “scleroderma.” Articles strive to provide (ACP) and the Pulmonary helpful information to aid Hypertension Association individuals living with the disease, as well as (PHA). Foundation staff noticed a significant their family and friends. “Direct Connection,” increase in interest about scleroderma from a bi-monthly publication for chapter and conference attendees throughout the year, support group leaders, continues to provide and inquiries into the Physician Membership support and teaching opportunities each Program. During June’s Scleroderma Awareness Month, month about leadership, counseling and awareness. chapters across the country hold “Stepping The Scleroderma Foundation continues to Out to Cure Scleroderma” walk-a-thons. These events have attracted over 12,000 participants expand its outreach to everyone within the disease’s community, as well as those who may and educated others about the disease. not have heard the word “scleroderma.” To meet the need of the scleroderma community’s growing online needs, the 6FOHURGHUPD 6 S H F W U X P The Scleroderma Foundation’s ECHO campaign emphasizes the importance of education within the medical community. The program is aimed at increasing awareness and knowledge among targeted healthcare professionals of the need to screen for—and potentially treat—PAH in its early stages to improve outcomes in scleroderma patients. Already, the Foundation, in conjunction with sponsorship from Actelion Pharmaceuticals US, Inc. and Pfizer, Inc., has launched an “ECHO” website and developed the “Scleroderma Spectrum”, a medical publication that focuses on screening, treatments, research updates, and patient care for medical professionals. In October of 2010, the Foundation published a second “Scleroderma Spectrum” which featured the article, “Pulmonary Arterial Hypertension in Systemic Sclerosis: The Importance of Early Diagnosis.” Currently, the Foundation is in the third phase of the campaign, which includes putting patient-focused educational materials about PAH screenings and tests into the hands of healthcare professionals so they can provide such information to their patients. Scleroderma Foundation 2010 Annual Report | 9 “Where Revolutionary Ideas Begin” The 2010 National Patient Education Conference The 2010 National Patient Education Conference offered 56 workshops, including 18 new sessions. Led by world-renowned scleroderma researchers, physicians and other professionals, the “Linda Lee Wells Memorial Workshops” offered the most recent information and resources. More than 600 people for Rheumatology and attended the Scleroderma Connective Tissue Disease, Foundation’s National Patient opened the conference with Education Conference in 2010 her keynote presented to a held in Boston. The annual standing-room only crowd. event was the largest in the Following the opening Actelion Pharmaceuticals US, Inc. organization’s history, and keynote, Harrison Farber, 2010 National Gold Sponsor brought together patients, M.D., hosted a grand lecture family members, caregivers about “Pulmonary Arterial and health care providers to learn the latest Hypertension in Scleroderma.” The 2010 information about scleroderma. conference offered 56 workshops, including With the support of the Foundation’s New 18 new sessions. Led by world-renowned England Chapter, “Where Revolutionary Ideas scleroderma researchers, physicians and Begin,” offered a unique opportunity for other professionals, the “Linda Lee Wells patients to share information and personal Memorial Workshops” offered the most recent experiences, and provided a place to reach out information and resources. The Foundation to others facing the same challenges, concerns also collaborated with the Raynaud’s and triumphs while living with scleroderma. Association to provide workshop sessions and Conference sponsors - Actelion resources for patients living with Raynaud Pharmaceuticals US Inc., Pfizer, Inc., Gilead Phenomenon. Sciences, Inc., and United Therapeutics each The Awards Banquet on Saturday hosted interactive booths and exhibits to offer night celebrated and recognized the additional educational offerings during the accomplishments of chapters and individuals event. Other exhibition tables were hosted in 2010. Country singer and songwriter by partner organizations such as Pulmonary Angela Martinez, of Nashville, performed her Hypertension Association and NeedyMeds, song “Right There,” a composition dedicated Inc. Thanks to the generosity of Actelion to all individuals living with scleroderma. Pharmaceuticals US, every conference Foundation CEO Robert J. Riggs also attendee received the debut edition of the announced that 2011’s annual event would be Foundation’s Health Care Management Binder, held in San Francisco. a valuable resource to help patients organize The conference concluded on Sunday with a their personal medical information including closing keynote by Stephen I. Katz, M.D., Ph.D., doctor’s contacts and medications. who discussed research as it pertained to the More than 250 people were first-time National Institutes of Health. Dr. Katz is the attendees to the conference. Twenty-seven director of the National Institute of Arthritis people were able to travel to Boston as and Musculoskeletal Skin Diseases. recipients of scholarship awards which were made possible by the Walter A. Coyle Memorial Scholarship Fund, the Susan Marie Scleroderma Foundation, the Michele Booth Memorial Scholarship Fund and individual donations. (See side panel.) Dame Carol M. Black, the director of Pfizer, Inc., 2010 Platinum Gilead Sciences, Inc., 2010 Conference Sponsor Bronze Conference Sponsor the University College London Centre For first time attendees, the National Conference brings hope to those who thought they were alone in the fight against scleroderma. Twenty-seven first time attendees were able to come to the 2010 National Patient tEXT hERE. Education Conference as recipients of scholarships. The scholarships, which included both partial and full funding for 29 deserving individuals, were made possible by the Walter A. Coyle Scholarship Memorial Fund. The Fund, which has become an annual program, was developed in honor of the late Walter A. Coyle’s longstanding efforts to promote support and education services for scleroderma patients and their families. Scholarship support also came from many individuals, chapters, the Susan Marie Scleroderma Foundation, and Actelion Pharmaceuticals U.S. After her experience at the conference, scholarship recipient Krista Hicks wrote, “Without this scholarship, it would have been impossible for me to attend, and I am extremely thankful I was there. I feel like I came away with a better understanding of the disease. I was fortunate to make many new friends and we all made a pact to attend next year.” The 2010 Scholarship Fund demonstrated an overall growth in applications received, funds raised, and scholarships awarded compared to its inaugural year in 2009. Scholarship contributions increased from $16,000 in 2009 to $26,000 in 2010, thus allowing the Foundation to provide an additional 10 scholarship awards. The Foundation would like to thank the Scholarship Committee, chapter and support group leaders and staff, and all those who contributed to the development and success of the 2010 Scholarship Fund. “Together, we have provided hope and opportunity to many members of the global scleroderma community,” stated Director of Development and Research,Tracey O. Sperry. Scleroderma Foundation 2010 Annual Report | 11 Facilitating Awareness Advocacy Together, we have the power to make things happen and to drastically increase the resources for people living with scleroderma. Emily Hill and Cindi Brannum from the Foundation’s Texas Bluebonnet Chapter fulfilled that statement when they met with U.S. Rep. Joseph Barton of Texas to talk about the Scleroderma Awareness Bills, H.R. 2408 and S. 1545. Also pictured is Darren Hill, from Health and Medicine Counsel of Washington. In the photo above, Mary Blades, president of the Missouri Chapter and a member of the National Board of Directors, testifies at the “New Dimensions and Strategies for Women’s Health Research for the National Institutes of Health” conference in Atlanta. The Scleroderma Foundation’s commitment The scleroderma community joined together to both local and national ADVOCACY and their message resonated on Capitol Hill. initiatives continued to prove even more Shortly after midnight Sept. 30, 2010, the successful in 2010. House unanimously passed the bill. Even In 2009, Rep. Lois Capps of California and though the bill failed to pass in the Senate, Sen. Rep. Vern Ehlers of Michigan, introduced Gillibrand continued to urge fellow lawmakers the “Scleroderma Research and Awareness to vote in favor of scleroderma research Act” (H.R. 2408) in the U.S. House of funding. Representatives. The bill would expand “The passage of H.R. 2408 is truly a federal support for the disease at the National testament to the determination of the Institutes of Health (NIH), increase awareness scleroderma community to have their voices of scleroderma among the general public and heard in the halls of Congress,” said Riggs. health care providers, and support training “The effort to get the ‘Scleroderma Research new scleroderma researchers. News of the bill and Awareness Act’ through committee, and spread to the Senate aisles, where Sen. Kirsten ultimately passed, has truly galvanized the E. Gillibrand later introduced S.1545. entire Foundation membership. We have to On June 16, as part of Scleroderma keep making our collective voice heard.” Thanks to the unwavering Awareness Month, 18 energy and determination Foundation members “The passage of H.R. 2408 of the advocacy teams, the and chapter leaders is truly a testament to the scleroderma bills won the visited policymakers determination of the scleroderma support of an additional six and elected officials community to have their confirmed cosponsors in the on Capitol Hill. Their voices heard in the halls of House of Representatives, message was loud Congress.” bringing the totals to 63 and clear: more funds cosponsors in the House and should go to find the four in the Senate. Thanks to the collaborative cause and cure for scleroderma. To that end, efforts of HMCW, the Scleroderma Foundation’s advocates strongly pushed Congressional Advocacy Committee, chapter staff and leaders to pass the legislation. “Our message scleroderma supporters nationwide, the was obviously heard,” said Robert J. Riggs, scleroderma bills continued to gain even the Foundation’s CEO. “Not only through our greater support from lawmakers. meetings on Capitol Hill, but also through Brian Ross Adams said, “We have truly raised the countless phone calls and emails that members of the scleroderma community made awareness of scleroderma and we should all be very proud.” Adams is executive director of the throughout this process.” Southern California Chapter and chair of the With the help of the Advocacy Committee, Advocacy Committee. Health and Medicine Counsel of Washington (HMCW) staff, and grassroots advocates, Visit the Scleroderma Foundation’s Advocacy the Scleroderma Foundation also hosted the Page at www.scleroderma.org/advocacy to National Congressional Call-in Day on Sept. 15. discover how you can join our advocacy efforts. In March 2010, Rep. Lois Capps (D-CA), along with Rep. Vern Ehlers (R-MI), introduced “The Scleroderma Research and Awareness Act” into the U.S. House of Representatives. Capps, who has represented San Luis Obispo, Santa Barbara and Ventura counties in southern California since 1998, has worked diligently to bring scleroderma awareness tEXT hERE.into the forefront in Congress. The congresswoman met with patients and their family members throughout her district like 14-year-old Cynthia Cervantes, and her mother Leticia, from Huntington Park, Calif. "I am so thankful to Congresswoman Capps for taking up our cause. When Cynthia and I met with her, we knew she would do whatever she could to help my daughter and scleroderma patients across the country. She and her colleagues in Congress have given us new hope today by passing this important legislation. She is our angel," said Leticia. “Women account for 80 percent of scleroderma diagnoses making this particularly important to the women’s health community. The exact cause or causes of scleroderma are still unknown and there is no cure, which make greater research into this disease all the more necessary. Passage of this bipartisan legislation will offer hope to the hundreds of thousands of scleroderma patients nationwide,” said Rep. Capps in a press release shortly after the U.S. House of Representatives unanimously passed the bill on Sept. 30, 2010. While the bill did not pass in the Senate during the last session of Congress, Capps was undeterred. She has again introduced legislation in the House of Representatives to help the scleroderma community. Scleroderma Foundation 2010 Annual Report | 13 Turning Hope into Reality Research Andreea Bujor, M.D. Jessica Gordon, M.D. Harrison Farber, M.D. Erica Herzog, M.D. Edward Leof, M.D. Eileen Hsu, Ph.D. Arnold Posthlewaite, Ph.D. What makes the Scleroderma Foundation both unique and progressive has much to do with its commitment to scleroderma RESEARCH. Funding quality research projects is the top priority of the Foundation, and in 2010 we continued the long-standing tradition of making research our single-largest budgeted expense. Established in 1989, the program’s budget has grown to allocate an average of $1 million in funds annually. The Foundation and its predecessor organizations have funded more than $18 million in research grants making it the largest nonprofit supporter of scleroderma research in the United States, second only to the federal government. Many past recipients who started their work with “seed money” from the Foundation have gone on to receive major funding from the National Institutes of Health (NIH) and the Department of Defense. The Research Grant Program has earned a unique place in the field of scleroderma research and is respected by government health agencies and has served as a model for other patient advocacy organizations. “Our understanding of scleroderma has increased dramatically over the past decade, thanks to the continued support of the Scleroderma Foundation’s Research Grant Funding Program”, stated Carol FeghaliBostwick, Vice Chair of the Foundation’s Board of Directors. “The program is vital not only to advancing the state of research on scleroderma, but also motivating new researchers to take an interest in the disease,” she continued. New investigator, Dr. Andreea Bujor echoed, “It is great to have a team of people dedicated to the fight against scleroderma like the Foundation’s leadership and donors, who help young investigators in their scientific pursuits to find a cure for this terrible disease. I feel very honored and grateful to be able to take our research in new directions.” In 2010, 31 proposals were reviewed and seven were selected according to merit by the Foundation’s Peer Review Committee. The Peer Review process, guided by NIH protocol and criteria, ensured Foundation dollars were put towards the strongest research proposals. Dr. Jessica Gordon, a grateful awardee shared, “This grant has enabled me to initiate my career with dedicated time and focus on research with the overarching aim to improve the lives of scleroderma patients.” The two highest scoring research proposals received the Foundation’s Marta Marx and Mark Flapan awards. The Marta Marx Eradication of Scleroderma Award went to Eileen Hsu, M.D., a new investigator from the University of Pittsburgh. The award is funded by bequests from Marta Marx, who had scleroderma, and her brother Rudolph Juhl. The Mark Flapan Award was received by Harrison Farber, M.D., an established investigator from Boston University School of Medicine. It is named in honor of the late psychologist and scleroderma patient Mark Flapan. The Walter A. Coyle Memorial Research Grant Award, made possible through the generosity of the Scleroderma Foundation’s New England Chapter was presented to Andreea Bujor, M.D. from Boston University School of Medicine. “The Foundation is proud and honored to continue to fund exceptional researchers who have both scientific and clinical expertise needed to conduct groundbreaking studies – for it is our hope that our funds will make a significant difference to researchers whose investigations may lead to a cure,” stated Tracey O’Connell Sperry, Director of Development and Research. The Foundation extends its appreciation to the many researchers and clinicians who have made the research program possible and to the many individuals, corporations and Foundation chapters who have contributed to raising funds for the research grant program. Norma Nadeau/Mary Van Neste New England Chapter Research Grant Chapters contribute to all aspects of the Foundation’s mission, including the Foundation’s Research Grant Program. Thanks to continued developments in chapter fundraising initiatives, chapters considered how they might donate even more funds to the research program. In 2009, the New England Chapter of the Scleroderma Foundation took the lead and generously established a research grant award. The award was created not only to fund additional research, but also to honor the memory of Norma Nadeau and Mary Van Neste - two great women who were instrumental in the formation of the Scleroderma Association support group that later become the Scleroderma Federation. The Chapter’s second award was given in 2010 to established investigator, Andreea Bujor, M.D., of Boston University School of Medicine for the project, “The Role of tEXT hERE. Caveolin-1 Overexpression in Scleroderma Fibrosis”. Below is a synopsis of her project. Scleroderma (SSc) is a chronic progressive multiorgan disease. Among other symptoms, patients with this disease have excessive hardening of the skin (fibrosis) due to increased deposition of collagen by the cells in the skin called dermal fibroblasts. The pathogenesis of scleroderma is still poorly understood and there is no cure for SSc fibrosis. Several proteins in the fibroblasts of SSc patients are deregulated and it is believed that these alterations contribute to SSc skin fibrosis. In our proposal we hypothesize that overexpression of a protein called caveolin-1 has an important role in activating two pro-fibrotic signaling pathways in the fibroblasts of SSc patients: the Smad1 and PKCδ/Fli1 pathways. We propose to utilize recently developed technologies based on adenovirus overexpression and RNAi to investigate the effects of caveolin-1 deregulation in cultured SSc fibroblasts. In this study, we will also use mouse models that overexpress caveolin-1 in their skin to understand the consequences of caveolin-1 overexpression in SSc patients. Our long term goal is to elucidate the role of aberrant caveolin-1 expression in SSc fibrosis, which may help select patients for future caveolin-1 based therapies. Scleroderma Foundation 2010 Annual Report | 15 Tomorrow’s Cure Starts Today Marta Marx Eradication of Scleroderma Award Eileen Hsu, M.D. New Investigator University of Pittsburgh IGF-II-mediated Fibrosis in Systemic Sclerosis Lung complications are the leading cause of mortality in systemic sclerosis (SSc). Pulmonary fibrosis in SSc is the excessive accumulation of scar tissue in the lung. Few therapies exist that adequately treat this fatal complication. Pulmonary fibrosis is believed to be mediated by the interaction of several growth factors that stimulate scar formation in the lungs. We have previously reported that insulin-like growth factor-II (IGF-II) is increased in the lung tissues of patients with SSc-related pulmonary fibrosis. Furthermore, we have shown that IGF-II induces production of proteins that contribute to scar formation. By utilizing a unique bank of lung tissues from SSc patients who underwent lung transplantation at the University of Pittsburgh, we propose to study the mechanisms by which IGF-II induces lung fibrosis. We also propose to study the genetic mechanisms that regulate IGF-II overexpression in SSc lungs. We will also measure IGF-II in the blood stream of patients with SSc to determine if IGF-II is associated with other patient characteristics and if IGF-II is predictive of the development of pulmonary fibrosis. Our research studies will provide a novel mechanism of disease pathogenesis and may lead to new targets for drug therapy for SSc-related pulmonary fibrosis. 2010 Research Grant Awards Mark Flapan Award Harrison Farber, M.D. Established Investigator Boston University School of Medicine, Boston The “PAH Phenotype” in Limited Systemic Sclerosis Increased pressure in the blood vessels of the lungs (pulmonary hypertension; PH) is a common complication of scleroderma (SSc) and is an important cause of mortality. Whether PH in scleroderma is similar to other forms of PH is not known. However, scleroderma is associated with damage to cells lining blood vessels (endothelial cells; EC) and increases in inflammation. In this grant, we will study whether changes in blood vessels increasing the risk of PH in scleroderma patients are due to EC damage and/ or inflammation. We will study genes and proteins that could account for these changes in blood vessels and determine if they differ from genes and protein in scleroderma patients who develop interstitial lung disease (lLD; scarring in the lungs). In summary, we are trying to find specific markers that determine which scleroderma patients develop PH, which scleroderma patients develop lLD, and which scleroderma patients develop neither PH nor lLD. Hopefully, these studies will find markers that could allow better screening and care of scleroderma patients and will determine better ways to monitor clinical course. Norma Nadeau/Mary Van Neste New England Chapter Research Grant Andreea Bujor, M.D., M.S. Boston University School of Medicine, The Role of Caveolin-1 Overexpression in Scleroderma Fibrosis (see insert on page 15 for more information.) Other Awardees Jessica Karen Gordon, M.D. Hospital for Special Surgery, New York, NY Gene Expression Profiling and Predictors of Outcome in Systemic Sclerosis The underlying cause of sderoderma is not completely understood, and, because of this, treatments for scleroderma are not curative. In this project we seek to improve our understanding of factors involved in the development of scleroderma, aspects which determine prognosis and targets for therapy. Ongoing at our institution is a clinical trial evaluating the safety and efficacy of imatinib mesylate (Gleevec) for the treatment of diffuse scleroderma. Preliminary results show significant improvement in skin and lung parameters. In this project, we will use DNA microarray, a powerful tool which enables us to measure the amount of production of over 38,500 genes from a single specimen on one gene-chip, to perform gene expression profiling on skin and blood samples from patients before and after treatment with imatinib and from controls. We will look for changes in gene expression with therapy and for predictors of response to imatinib. We will examine whether targets expressed in blood correlate with those seen in skin. Using these results we will validate potential biomarkers of disease activity and prognosis in a separate group of patients and controls. The knowledge gained in these investigations should provide new directions for the understanding of scleroderma. Semaphorin 7a in the differentiation and accumulation of fibrocytes in the diseased lung in a mouse model of pulmonary fibrosis and increased levels of Semaphorin 7a in the blood of patients with scleroderma-induced lung disease. This protein plays a pivotal role in brain development and has more recently been described as a regulator of immune cell activation. Aside from our preliminary work, there is no link between Semaphorin 7a, fibrocytes and scleroderma. It is Erica Herzog, M.D., Ph.D. this area that our proposal seeks to explore. Yale University Thus, Aim 1 of this proposal will determine the Semaphorin 7a-Mediated Regulation of mechanism through which Semaphorin 7a affects Fibrocyte Biology in Scleroderma ILD the differentiation and activation of fibrocytes obtained from patients with scleroderma lung Systemic sclerosis (SSc) is a devastating disease disease. Aim 2 will determine the mechanism and in which the skin and internal organs are replaced cell types through which Semaphorin 7a and its by scar tissue and collagen. While great progress receptors promote or inhibit the differentiation has been made in treating the kidney complications and activation of fibrocytes in a mouse model of of this dreaded disease, lung complications have pulmonary fibrosis. emerged as a major cause of mortality. One major It is our belief that these highly innovative and category of scleroderma induced pulmonary robust studies will strengthen the novel association involvement is interstitial lung disease (ILD), or we have uncovered between Semaphorin 7a, replacement of the gas exchange region of the lung fibrocytes and SSc-ILD, and perhaps provide insight with scar tissue. As there are only limited treatment into disease pathogenesis that could be used for the options for this problem, many patients with SScdevelopment of novel therapeutic targets for this ILD progress to respiratory failure and, ultimately, otherwise incurable disease. an untimely death. Thus, a greater understanding of the factors promoting lung fibrosis remains a Edward Leof, Ph.D. great priority in this disease. Mayo Clinic Rochester One emerging area of interest in this area is TGF-beta Regulated Fibrosis the role that certain types of immune cells called “fibrocytes” may play in the development of scleroderma lung disease. Elegant studies by Transforming growth factor ß (TGF-ß) is a a number of investigators including our own multifunctional protein which can be either have found that these cells, rather than being helpful or harmful to human health. While its programmed to fight infection, are skewed towards ability to stimulate cell growth is important for a program of scar formation. Fibrocytes are normal wound healing, when unchecked the associated with the development of scleroderma. function of many organs can be disrupted by scar Unfortunately, the mechanisms that regulate (i.e., fibrosis) formation. Since approximately 45 fibrocyte biology are not well understood. percent of mortality in the developed world is We have recently found a novel role for caused by some type of chronic fibroproliferative pathology, addressing this issue is critical. To that end, as the number of effective therapies are limited, the current application will, finally test whether simultaneously targeting multiple TGF-ß pathways can provide the necessary preclinical data to generate a new Phase I/II clinical trial; and second, develop a novel bioassay to screen for small molecule inhibitors of fibrotic diseases, including scleroderma/systemic sclerosis. Arnold Postlethwaite, M.D. University of Tennessee Health Science Center Ssc Platelet Phenotype Affected by Cytokines It is generally believed that one of the initial events in hemostasis is the interaction of platelets with underlying collagen of the damaged vessel walls. When blood platelets come into contact with the damaged vessel wall, they clump together to form thrombi (clots). The vessel wall component involved in this process is thought to be a protein constituent known as collagen. Ongoing microvascular injury is a hallmark of systemic sclerosis (SSc or scleroderma). The micro-vascular injury is associated with micro-thrombi (small clot) formation secondary to platelet aggregation. Platelets are tiny fragments of cells called megakaryocytes. Under normal condition, these platelets circulate in the blood vessel. When they come into contact with damaged vessel walls they become sticky. This property is caused by the chemical changes that occur inside of the platelets, which can trigger the stickiness of platelets. Under this condition, tanned platelets interact with each other to form small aggregates (micro-thrombi). They affect blood circulation. We hope to understand why chemical changes occur in platelets and what are the mechanisms that control the chemical changes, which could be used to modulate the activation of platelets that causes pathological thrombi formation in SSc. Scleroderma Foundation 2010 Annual Report | 17 Philanthropy in Action During a broadcast of CBS’ “The Early Show” in 2010, former anchor Harry Smith helped promote the TriState Chapter’s “Stepping Out to Cure Scleroderma” walk-a-thon at Battery Park in Manhattan. Development The work of the Foundation would not be possible without the generosity of our donors. From individual gifts to corporate sponsors, from major chapter events to national initiatives, 2010 was a year rich in philanthropic support despite continued fiscal turbulence. It is very heartening to see that the work we do to fight scleroderma is still something in which many are willing to invest. Without our donors, sponsors and members, the work of the Scleroderma Foundation could not continue, nor could we have grown into the world’s largest nonprofit organization dedicated to serving the needs of the scleroderma community. It is the belief in the Foundation’s threefold mission that spurs the generosity of our donors. It is the hope of a cure that drives us forward in funding the most promising, peer-reviewed medical research happening throughout the country. Because our supporters believe in the strength of our mission and trust in our ability to carry that mission out, the Scleroderma Foundation continues to be a leader in patient education and support services, and a resource for researchers working to eradicate this disease. Support to the Foundation comes in many shapes and sizes – from a walk of 500 people to a children’s birthday party, from a marathon run to an elegant gala. Whether it’s a donation of water for an event, a memorial gift, or corporate grant; workplace giving donation, direct mail response, or membership, each and every donation sets the Foundation to benefit millions of people with scleroderma for years to come. Although all the efforts made by so many to support the Foundation are too numerous to mention, below are some philanthropic highlights of 2010: Stepping Out to Cure Scleroderma Walkers and runners from across the country took many strides in 2010 to support the Scleroderma Foundation through its signature event, “Stepping Out to Cure Scleroderma”. Thousands of people walked and raced to help raise awareness and money for the Foundation. Chapters, support groups, and individuals hosted 44 “Stepping Out to Cure Scleroderma” events in 23 states. These fundraising and awareness events raised more than $1.1 million for the Foundation. There also were seven inaugural walk-a-thons events held in 2010. Events were held at parks, trails, running tracks and shopping centers. Each year, these events provide a great way for supporters of the Scleroderma Foundation to come together and help advocate for a great cause. Beyond the financial success of the events, “Stepping Out to Cure Scleroderma” walks raise an inestimable amount of awareness and generate significant media coverage in cities small and large throughout the country. National Gold Sponsor For the third year in a row, the Scleroderma Foundation was gratified to have Actelion Pharmaceuticals US, Inc., as its National Sponsor. Through this important partnership, the Foundation received an unrestricted educational grant that provided significant underwriting to support key programs and services, both at the national and chapter levels. Among the programs that benefited from the support of Actelion in 2010 were: • The National Patient Education Conference in Boston • The Chapter and Support Group Leadership Conference, also in Boston • “Stepping Out to Cure Scleroderma” walk-a-thons • Chapter patient educational events • National patient support activities, including the Foundation’s website, patient information packs, new patient education literature and the national tollhfree Helpline. • Support of the Foundation’s Echo Campaign (see sidebar on pg. 9) The Scleroderma Foundation leadership is profoundly grateful to Actelion for their continued and significant support of the work and mission of the organization. Their corporate philanthropy has had a profoundly positive impact on the Foundation’s ability to grow and improve services to the scleroderma community. Chapter Support of National Initiatives and Programs In 2010 there was a significant increase in the chapters of the Scleroderma Foundation giving dollars from their local treasuries to support initiatives and programs at the national level, thus advancing the true synergistic partnership between the national office and 23 chapters that are critical to advancing the mission of the Foundation at the local level. As in years past, the chapters of the Foundation generously supported scleroderma research and in 2010 collectively provided more than $400,000 through voluntary research contributions. These voluntary research contributions are given out of chapters’ budgetary surpluses or cash reserves. The level of such support is a true testament to the common hope that everyone within the Foundation shares – the hope of a cure. Beta Sigma Phi For 29 years, the sisters of Beta Sigma Phi have supported the work and the mission of the Scleroderma Foundation. Since 1980, the California Councils and the Beta Sigma Phi international endowment have raised awareness and contributed over a half a million dollars to support the Scleroderma Foundation. This year, the philanthropic chairs donated close to $50,000 for the various California councils and the national organization. The Petitt Family with Brian Ross Adams No words are strong enough to convey the tremendous debt of gratitude that is owed to the recipients of the Scleroderma Foundation’s Outstanding Individual Fundraising award for their efforts in 2010. The Pettit family of Coto de Caza, Calif., established the annual “Fight for Lexi Charity Golf Tournament” and continuously supports the Southern California “Stepping Out to Cure Scleroderma” walk-a-thon. This selfless family has raised more than $350,000 for the Scleroderma Foundation during the past three years alone. “We greatly appreciate the work that Chris, Melinda and Lexi have done, and how committed they are to helping those living with scleroderma,” said the Southern California Chapter Executive Director Brian Ross Adams. The Pettit family has provided significant hope and support for the entire scleroderma community through their continued effort to generate awareness and funds for the Foundation. Scleroderma Foundation 2010 Annual Report | 19 The following document was developed by the American Association of Fund Raising Counsel, the Association for Healthcare Philanthropy, the Association of Fundraising Professionals, and the Council for Advancement and Support of Education. It has been endorsed by numerous organizations including the Scleroderma Foundation. The Donor Bill of Rights Philanthropy is based on voluntary action for the common good. It is a tradition of giving and sharing that is primary to the quality of life. To assure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full conficdence in nonprofit organizations and the causes they are asked to support, we declare that all donors have these rights: • To be informed of the organization’s mission, of the way the organization intends to use donated resources, and of its capacity to use donations effectively for their intended purposes. • To be informed of the identity of those serving on the organization’s governing board, and to expect the board to exercise prudent judgment in its stewardship responsibilities. • To have access to the organization’s most recent financial statements. • To be assured their gifts will be used for the purposes for which they were given. • To receive appropriate acknowledgement and recognition. • To be assured that information about their donations is handled with respect and with confidentiality to the extent provided by law. • To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature. • To be informed whether those seeking donations are volunteers, employees of the organization or hired solicitors. • To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share. • To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers. Come to Historic Boston for the Scleroderma Foundation 2010 National Patient Education Conference The generous support of individuals, families, businesses, foundations and organizations plays a crucial role, and enables the Scleroderma Foundation to continually renew and expand its commitments to the scleroderma community from year-to-year. This philanthropy allows the Foundation to create programs that affect the lives of those living with scleroderma. We could not fulfill our mission of service to patients and families, nor provide funds to advance research to find the cause and cure for this disease, without the continued and generous support of so many people from across the U.S. and the world. Individual gifts are the pillar of the Scleroderma Foundation, and no words are strong enough to express the tremendous debt of gratitude that is owed to those who support the Foundation’s mission and work. Robert J. Riggs, Chief Executive Officer We are committed to excellence in each aspect of our mission of support, education and research, and thank you for collaborating with us on this important work. Through our partnerships with you, we touch lives to bring hope and compassion. We also provide much needed research funding to bring us a step closer to a cure. Together, we make a difference in the scleroderma community and beyond. Each gift, no matter the size, is important. Every donor plays a critical role in the fight to eliminate this disease and support those whose lives have been affected by scleroderma until a cure is found. On the following pages, you will find a list of donors who supported the Foundation’s work in 2010 with a gift of $500 and greater. To those listed, and to those not listed (to conserve both financial and natural resources), we extend our deepest gratitude for your generosity and gracious support. Thank you for your continued support of the Scleroderma Foundation and the commitment we share with you to advance our mission. With gratitude, Chief Executive Officer “Where Revolutionary Ideas Begin” Scleroderma Foundation 2010 Honor Roll of Donors $50,000+ Actelion Pharmaceuticals US, Inc. Combined Federal Campaign Paula May Estate of Philip L. Milton Pfizer, Inc. $25,000 – $49,999 George and Lisa Etheridge Gilead Sciences, Inc. Sanford Goldston Estate of Zena B. Hellman Estate of Joan Lindeman Estate of August Negro Estate of Maureen Hope O’Connor Southern Wine & Spririts of America $10,000 – $24,999 In 2010, Charity Navigator, the independent organization that rates the financial health and efficiency of charities, gave its top rating of four stars to the Scleroderma Foundation. This “exceptional” rating indicates that the Scleroderma Foundation “consistently executes its mission in a fiscally responsible way, and outperforms most other charities in America.” Charity Navigator’s rating system examines two broad areas of a charity’s financial health: 1) how responsibly it functions day to day and 2) how well positioned it is to sustain its programs over time. According to Charity Navigator, this four-star designation reflects the commitment of the Scleroderma Foundation’s leadership to strengthening its overall operation, effectiveness and cost reduction practices. Joseph and Joann Anatasi Dennis Benner Bethpage Federal Credit Union Jules and Leslie Cogan The Duke Family Deborah and Ed Gallup George Gottesman Gerold Kirschner Charles Lawrence Lacy MacCutcheon Golf Mario Dozzo Foundation Mary Morton Barbara Musco Estate of Dorothy E. Paulson Estate of Angela Snyder-Bellew Teri’s Run Foundation Terlato Wines International Young’s Market Company Sol and Tina P. Waxman Foundation Estate of Wilbert E. & Hannah Wilhelm, Sr. Estate of Gloria H. Wurthner United Therapeutics, Inc. $5,000 – $9,999 Anonymous Phil and Peggy Adams Are You Smarter Productions, Inc./Chris Harrison Bank of America Matching Gift Fund Beta Sigma Phi Endowment Fund Beta Sigma Phi/Northern CA Council Beta Sigma Phi/Orange Coast California Council Beta Sigma Phi/Southern California Council Albert Bradford Marlene Calverley Dr. Joseph and Theresa Camerino Sarah Campbell Russell & Debbie Chicoine Janet Chinelli Columbia Construction John Devaney Mark R. Eaker, M.D. Valentine Fenti Herbert Goldberg Peter and Carol Goldman Bruce Gordon John Hummer Kohl’s Gives KPMG Community Giving Campaign The Kroger Company The Kroger Company, Ralph’s, Food 4 Less Saul and Eleanor Lerner Foundation, Inc. William Ludel Main Street Events The June and Cecil McDole Charitable Fund Jack Napoli Maria Narvaez Old Bridge Rotary Senior Housing, Inc. Darin Perri Helen Polenz Prime Motor Group Rose Hills Foundation David Rosenberg Lauren Anne Scarantino Steven and Susan Scholer Adriane and Jonathan Schorr Steven J. Seidemann Michael Stave SWS Charitable Foundation S. Jerome Tamkin, M.D. John and Patricia Tishler Freddie and Jodi Vasquez Norman & Marilyn Weizenbaum Philanthropic Fund, Of The UJFF Mark Witek $1,000 – $4,999 Anonymous (3) 215 Golf Classic Ransom & Charmaine Adams Adart Company Sidney & Beatrice Albert Foundation Allgood Pest Solutions Barry Alt Michael Ammirabile AMSPEC Services LLC Jeffrey Anderson Michael S. Anderson Teresa Andresen Arch Insurance Group Cheryl Argiros Association of Philippine Physicians Autoimmune Association Koren Ayers Suzy Ballantyne Mary Ann Barrett Stacy J. Barron Alvin H Baum Family Fund Reginald and Margaret Bayley Stephanie Beck Carole Beeson June L. Bender Kay Benjamin Fran Bernstein Craig and Cynthia Besselievre Best Buy Co., Inc. Beta Sigma Phi/Camino Real California Council Beta Sigma Phi/Central CA Council Beta Sigma Phi/Far Northern CA Council Beta Sigma Phi/Mission CA Council Beta Sigma Phi/Pacific CA Council Mary and Ben Blades Gloria Blanco-Duque Ann M. Bommarito Dr. and Mrs. Bookbinder Rob and Teresa Branson Michael Bresnahan Carl and Peggy Briggs Roni S. Brown Bruce and Judith Brunson Heather P. Burns Mr. and Mrs. Jason Calverley Cardinals Care Lisa M. Carpentiere H. Carr & Sons Olga Casarella Patricia Castelhano The Center For Rheumatology Central General Medical & Dental Jan E. Chatten-Brown Chevron Humankind Employee Funds Vernon Childs Emily and Greg Chillino Antonietta Chiocchi Ling Bun Chu and Family Church of Religious Science Mark and Lisa Cicirelli Charlotte and Norman Codo Catherine J. Coggins Aaron Cohen Mr. and Mrs. Edward A. Elliott Lea Collins Emerson Closetmaid Kevin P. Conlisk Emilios Beverage Warehouse, Inc. Christopher J. Conroy Nicole Evangelis Constellation Energy Nuclear Expert Parking, Inc. Group Robert G. Fairfield Mary Contadino Robert Fairfield Coombs Family Farley’s Appliance Corrugated Supplies Company George and Theresa Cotsirilos Dr. Carol Feghali-Bostwick Maggie Courtney Barbara and Larry Field Bruce Cowan Fieldman Sims Foundation Lindsay Cowan Lesli Flick Crane Foundation Dawn and George Fountas Credit Suisse Robert Fraley Crown Painting Inc. Francis Harvey Sons, Inc. Daniell Family Foundation Virgina Fritz DanversBank Fusco, Brandenstein & Rada, P.C. Anthony D’Aquino Adam Geller tEXT hERE. Gail Davis Barbara and Howard Geller Judy Davison Patricia and Peter Gerardi Amelia DeGeiso Kathleen K. Gero Sherlyn Delaney Glamorise Foundations, Inc. Kelly and Dean DeLisa Glynn Electric Robert and Eleanor Demple Felicia Gold Family Foundation Fred Goldberg Alex Denahan Goldbug Parties, Inc. Wellington Denahan Barry S. Golden William C. Dennis Goldstein Enterprises, Inc. William and Katharine Dennis Kevin Gomez Mr. and Mrs. Armand DePalo Theresa Gordon Dr. John Dettmers Elaine Gottesman Donald A. Devlin Dr. Brad Grasman Margaret Diehl Patricia Greenhood Beth Dominguez Ann Grovenstein-Campbell John and Maryann Donohue Harriet H. Gutknecht Lily Donohue Beverly Hahn Sam Doumanian Kerry Hall Driggers Family Foundation Craig R. Hall, M.D. Kathleen Duncan H. Lowell Hall Kate Duprey Estate of William B. Hanrahan Robert J. Eck Mr. and Mrs. Robert Hardman Eisner Amper William H. Harms Scleroderma Foundation 2010 Annual Report | 23 Scleroderma Foundation 2010 Honor Roll of Donors Chad and Monica Haufler Healthcare Research & Analytics Lynne Heaviside Helen Kay Foundation Hobbs Brook Management LLC William Hosson Mark T. Howard HRA Hospital Research Associates Anna Mae Hull IBM Employees Harry Issler J. M. & A. Group Frederick Jackson Samuel Jefferson Kitsa and Ronald Jobeless Dawn Johnson Patricia D. Johnson Rosa Johnson Johnson & Johnson Family of Companies Bob and Jean Kacick Kaiser Permanente Kaloutas Painting Stephanie Kaminski Kasin Family Foundation Judy Katz Stanley Kaufman Catherine Kay Emily King Daniel and Marie Kivel Al Klail Debra Kleban Walter Kluka-Charitable Unitrust David Knoller Knox Building Account Dara Kotkin James Krantz Marc Krieger Mark Kroh La Habra Host Lions Foundation Laclede, Inc. Herbert A. Lampert Jeff and Lisa Lanctot Land Baron Abstract Company, Inc. Mr. and Mrs. Charles Latham Dr. and Mrs. George Leopold Kathleen Leutze John Levengood Jack J. Levy Anne Lewis Lieben, Whitted, Houghton, Slowiaczek & Cavanagh P.C. Limbach Company LLC Links Golf Club, Bobbi Salmon Golf Tournament Erin E. Linnihan Kristen M. Litwinka Los Angeles Transportation Club Lula Wilson Trust Jeffrey Mace Shauna Mace Shannon Macri Mary and Sam Mahler Owen and Nancy Makoroff Betty A. Mallon Cos Mallozzi and Ronni Shulman Andrew J. Manganaro, M.D. George and Karen Manson Lawrence and Nancy Marcus Ronald and Rosemary Markoff Brian Marsalli Robert F. and Kira J. Maton Mr. and Mrs. Robert A. May McCarter and English Alan R. McDaniel Jan and Stephen McDougal McDowell Family Trust Renee McElveen The McGraw-Hill Companies George and Dorothy McLaughlin Estate Of Sybil Cooper McLeod Elizabeth Meaney Medco Health Solutions Inc., and Medco Health Affiliates Aida L. Mei Mennonite Foundation Merck Partnership For Giving Janice Messina Metroplex BB Mgt. Inc Jerry Metz MicroSemi Co. Microsoft Matching Gifts Program Darya Miller Paul Miller Lois B. Miller Gordon H. & Karen M. Millner Family Foundation Moore Stephens Tiller LLC Ken Morano Diana and Willie Moss Motorola Foundation Jerald Mundell Munlake Contractors, Inc Kevin Murphy Tim Murphy Zina Murray Jeffrey Myers National Foundation for Human Potential NBT Bancorp Marion Necatera NER Construction John and Theresa Newsholme Newsholme Financial Services Doris and Robert Niles Joshua Nixon John R. Nooncaster NPG Foundation Jean Oelkers Steven D. Oppenheim Lanny and Camille Outlaw Palo Alto Medical Foundation Dianne L. Pandolfi Michelle Pandolfi Rosalind Papaleo Sina Passarelli Torin and Natasha Pavia Lloyd W. Pedersen Paul E. and Jacalyn A. Pepperman Tina and Joe Perri Jill K. Petitto Melinda Pettit Sacha Phillip Jennifer Phillips Pima Credit Union Harold Plack Polk Family Charitable fund POMCO Group Carol Porcino Frank R. Postma Frank and Denise Quattrone Foundation John and Janice Quinn Kimberly Pires R.S.P. & Associates Todd Rainey Estelle Randolph Vandana Rao Raynaud’s Scleroderma Support Group Rosemary W. Reeves Fred and Ann Reif Edith Diane Reynolds The Ridgeway Family Phyllis and Edward Riegel Riggs Oil Company Jane H. Risolo Katie and Ross Ritto Mike and Annette Robbins Robert Norris Charitable Fund Frank and Jackie Robinson Paul Rom Serena L. Roman Ronald P. Bordeau Contracting Ira and Judy Rosenberg Rosenson Family Foundation Marvin Rubin Sagamore Plumbing & Heating Sage Foundation Lou Sans Peter Scheid Tomasina Pia Schiro Nick Schulte Schwab Charitable Fund Scleroderma & Raynauds Treatment Center, North Shore LIJ Health System Scleroderma Association of British Columbia Jack Seagraves Seaward Investment Management Scott E. Shaffer Ellen Haug Shannon Dr. Lee Shapiro Betzi and Jim Sheff The Estate of Edna R. Short James Skovron Mr. and Mrs. Larry M. Smith Nancy and Michael Sokil South Bay Hand & Upper Extremity Center Jennifer Stanco Rachel Stempel Sharon Sternheim James and Laurel Stevens Richard W. Stewart Janet Stucky Stupell Foundation Inc. Danielle Sucich John Tahtabrounian Martin E. Tanzer TCAA, Inc. TD BankNorth Ten Count Farm William Thompson Heather Tielens Toolan Family Foundation Sarah Scott Tornes Toyota Financial Services Toyota Motor Sales Trico Foundation The Turan Family Foundation University of Connecticut Foundation United Way of Dane County Valassis Giving Charlene M. Vasquez Richard and Joe Ventura Verizon Charles E. Victor Renee Villela Paul and Debra Vogt Peter B. Walker The Walsh Foundation Patricia and Kevin Waszmer Alyssa Waters Joanie and Robert Weick Mrs. Nancy Wempe Joseph Werner Western Nebraska Community College Westroads Medical Group, P.C. Joe and Arline Wetter Michael Wicnienski Zena Wiener Stephen A. Williams Brett and Kristen Wilson Robert and Susan Wislow Edwin & Shirley Woldar Family Foundation Women’s Issue Committee, NYS Corrections, Clinton HUB Andrea Youndt ZBI Employee Allocated Gift Fund $500 – $999 A & B Foundation A & J Paxos Inc./Country Coffee Shop Nancy and Steve Abraham Charles and Glenna Beckman Janet Abrahm Mr. and Mrs. Donald A Belgrad Ace Sandblast Company Donald Belgrad and Dorothy Active Network Schnadig Kent and Julie Adams D. Theodore Berghorst Patrice Adams Bergman Incentives, Inc. Rus Adams Thomas G. Berkery Advantage Communications Group Charlotte Berkner Harold and Barbara Berry Bruce and Millard Affleck Marina and Tina Maria Birch Mary and Steve Albright Robert S. Birch Danielle, Liz and Ron Alexander Joseph and Nancy Blackstock Morag M. Alexander Mark J. Bluth Donald E. Alkinburg Laurie Bolton Lori L. Alkinburg Brian Bousley Allstate Giving Campaign Mr.and Mrs. Curtis Boyd, Jr. Almaden Physical Therapy, Sypriya Michael Boyd Maniar Richard W. Bozel Altman Family Foundation tEXT hERE. Paul R. Brady Jennifer Amendo David Brainard American Risk Ellen and William Brainard Anadarko Petroleum Corporation Harry Brandt Mark and Teresa Anderson Rebecca Brechko Michael C. Anderson and Vicki M. Dana M. Brewer Shaw-Anderson Joi Britt Arbitech LLC Dena and Boruch Brody William and Rosemary Arnold Maureen and Burrow Brooks Roger and Paulette Aurelio Vic and Linda Brown AXA Foundation Jan E. Brown-Chaffen James Babcock Sue Brucker A. Bailey Plumbing and Heating Corp. Robyn L. Burdick Baldwin High School Key Club Danielle Caccavale Carol Baldwin Maryann Caliri The Bank of New York Mellon James and Katherine Calkins Community Partnership Cheryl Cammarata Tina Barbaro-Polis Cardinal Health Foundation, Inc Kathleen Barclay Carolinas Chapter Of NCRS Jennifer Bard Antonino Cartelli Tara Barker Christine Cassidy Susan Barney John L. Castleman Gary Barron Jonathan Cerrata Mary Jo Basile Ron Chapman Stanley Becchetti Scleroderma Foundation 2010 Annual Report | 25 Scleroderma Foundation 2010 Honor Roll of Donors Kathryn Charles Jamianne Cheneski Cherokee Brick & Tile Company Cherry Creek, Inc. Anne Christie Kate Chura-Lynch John M. Cioffi J. Howard Clark Charles Clarke and Vanessa Balbec Clarke Doug Clarke Cathy Engle Dr. Philip Clements Donald and Theresa Cline Jeanne and Rick Cline Matthew J. Cohen Morrie Cohen Tracey Cohen Terry R. Cole Communities Foundation of Texas Constellation Brands, Inc. Hal Coppinger John Cortinas and Family Cross Country Group Crowley Volkswagen CSR Real Estate Services Ralph Curriera D & L Rentals, LLC D.A.V. Aux Inc., Unit 84 David and Stephanie D’Arcangelo James and Bonnie Davidson Michael Dawley Haitham Dawwas Lisa DeGaetano Riccardo and Lisa DeGirolami Rose Ann DeHaven Shennen A. Dell’Anno Kevin M. and Linda A. Dempsey Lauren Denney George A. Depasquale, Jr. Estate of Betty P. Dietrich Diversified Construction Group Robert Don Dr. Brian Drucker Drydock Marine, Inc. Tom DuBois Joyce A. Dunkle Gail Duty Tony and Sarah Earley Jim and Theresa Edington Carolyn Edwards Jonathan Eisenberg Susan and Timothy Endreson Demetria Enright Beatrice Epel Stan Eskridge Kevin J. Leary Fairways at Lake Ridge Women’s Club Deborah D. Fehringer Barry and Susan Feinberg Helen C. Felice Genevieve A. Felix Mr. and Mrs. Bruce Fischer Crystal Fisher Helene Flapan Barbara Flynn FM Global Foundation William and Joanne Formon Irene Fox Fraternal Order of Police, Chicago Lodge #7 Harold Fried Robert and Judith Frinier Dr. Daniel and Elaine Furst Helene Gagnon John J. Gallagher Anne Garland Brandi Garnett Christine Garrant John H. Garrett, Jr. Gary’s U-Pull It, Inc. Bill & Melinda Gates Foundation Matching Gifts Program Rod E. Gauchat Lisa M. Gearen General Electric Foundation Gentle Dental Lance Geyer Giant Foods GlaxoSmithKline James Gleason Glusman, Broyles & Glusman, LLC Jan Gnall Goldman & Sherman Families Lisa J. Goldsman Joe Gonzalez Bill and Joi Goodbread Allen Gorrelick Diane Gottlieb Steven and Carolyn Grantz Harold Grasman Charlotte B. Gregory Richard Grossklas Mr. and Mrs. Richard A. Guinta Allen Hagadone William M. Hale Beatrice Halstead Theresa Hanrahan Craig Hansen Jerry Harnik Bernadette Harrison Kathryn and Jeffrey Hart Jessica Hartgraves Amy Hartig Ann and W.G.Hays Healthmark Foot & Ankle Associates, P.C. Brent Heilig Kelly Heisey G. Michael and Joann W. Heller Sherry Hellweg John Helm Robert E. Helpern Janet R. Hemley and Family Melissa C. Hicks, CRNA, Inc. Jeff G. Hoen Homan & Stone, Attorneys At Law Ron Hopkins Debra Houghton Billy Howell and Family Susan Huber Maria Hughes Mary Hughes Jennifer Hull Hyperbaric & Wound Management, LLC Lena Iacono IAFF 4323 IESI Corporation IGG America Toni-Dara Infante Karen Ann Ingwersen Intelligent Women Club J. J. Bafaro, Inc. J.C. Printing Sue Jacobson Judith V. James Tiffany Jamieson-Ward Heather Johnson Sylvia J. Jones Michael A. Jones Sally Kahn Andy Kaiser Kappy’s Fine Wine & Spirits Katarsky Family Dan Katcher Marc Kawakami Cynthia Keats Ron Kegerreis Larissa Kesala Suzanne Killea Christine King King Electrical Contracting Knights of Columbus #9667 Michael and Lisa Koewler Wendy A. Kopchak Crystal R. Kornblau Craig and Sara Kuykendall L.A. Chapter of the CPU Society Theresa Lachman Lynda Lackups Camille Lake Maurice Burt Lampl Edward Lassiter Mike Laurence Eric and Sandi Lawson Peggy and Mike Leavengood Bruce Leboff Frank and Ellie Leboff Ronald B. Lee David and Lois Leeds Edward Leiber Dr. Bradley M. Lemberg Rob Lemen Jeffrey Lennox Marilyn H. Levett Mr. and Mrs. Mark and Linda Levine Monica Libby Liberty Glass & Metal, Inc. Litwinka & Company Carla J. Lobner Elizabeth and John Lockwood Carmen Lopez Donna and Steve Loraine Lubrizol Foundation Lynn and Mike Lullo Nicholas and Karen Llygizos Cheryl Lytle Elizabeth MacLean Debbie Macomber MAFCU Federal Credit Union Michael Majerus Dr. Bonnie Maltz Fred Mandrick Robert B. Mangum Richard and Michelle Manson Marblehead Savings Bank Mr. and Mrs. Jerry Marsalli Patricia Martin-Hillers, The Martin Group J A Tony Martinez Vincent J. Martorana Bob McCloskey, McCloskey Insurance Hugh T. McCormick Suzi and Doug McCraw Nancy McDonald Mr. and Mrs. William McGuire Ben G. McLauchlin Holly Meller Mr. and Mrs. Jeffrey Meltzer Alfonso J. Mercurio Lynn Merel Megan Mergener Sandra Messinger MetalCut Products Benjamin Meth Metro Race Forum Donald Michaelian Midlands State Bank Deon Midyett Catherine M. Miller Janette Miller Putnam Chris Miller Gary and Janell Monetti Thomas Morano Susan Morano Morgan Stanley Sandra Morrison David and Linda Moscow Natalie Murdolo Michael Murphy Vincent J. Murphy Alan and Amy Musikantow Richard S. and Winifred B. Myrick Fund Glenn Nakata Madeline E. Quarto Tony Namvar Verne and Judy Rainey Shirley Nardiello H. Lewis Rapaport William A. Nassal Dr. Ted and Brenda Rappaport Ralph Neusawer, Jr. Bruce A. Rasmussen New York State United Teachers Juliann Clark Nanci Newman Jessica M. Remza Virginia M. Remza David E. Newman Thomas C. Renninger James G. Nicholas Arthur Resch Noble Davis Consulting, Inc. Craig and Victoria Reynolds Now Care LLC Sharon A. Richards Don and Geri Nunes Charles Richardson Kevin Obymako Robert Richardson De Etta O’Connell Brian Inniger Ann B. O’Connell Robert J. Riggs George Olin Joseph and Wendy Rinchiuso Theresa Carter Robinson’s Ace Hardware James O’Neil tEXT hERE. Cait Rohme Mary Ann O’Neil Shannon and Ramon Romo Stuart Orsher, M.D. Steve and Chandra Rowley George and Loretta O’Shea Judy Rucinski TerryAnn O’Sullivan David Russell Ozark Sportsmens Club Thomas Ryan P.H. Mechanical Corp. Donna Sack Barbara Padilla Safeway, Inc. Joseph Palumbo Jerry Sager Jay and Barbara Peak Wanda Salcedo Pedersen & Houpt San Jose Water Company Louise Penny Ruth Saphirstein Penske Corp. Saul Ewing LLP Cheryl Peters Joanne Scheller Albert and Noreen Platten Pleasant Valley Lions Club Charities William A. and Mary L. Schetter Angie Schmitz Bryan Plude Kenneth M. Schneider Stephen Porter Robert Schneider Robert and Georgia Pourchot Pearl Schultz Progressive Tool Co., Inc. Linda A. Sciuto Joan Provizer Michael Scully The Prudential Matching Gifts Mark Seiler Program Andrew Semons John Purcell Alycia Senisi Q.F.D. of New York Inc. Scleroderma Foundation 2010 Annual Report | 27 Scleroderma Foundation 2010 Honor Roll of Donors Philip Sfreddo William Shaffer Shamrock Lawn & Landscape Mark D. Shelnutt, P.A. Steven P. Shepard Constance Shiaras Silver Line Building Products Jill Simon Anita Simons S-K Partners Ltd. Steven Skehill Lori and Joseph Sledzik Stacie Slowiak Joseph R. and Denise J. Smith Kathy Ublasi Phyllis Sneed Solamere Homeowners Association Sorbara Construction Corp. Sovereign Bank Shirley Spaseff Sports Medicine South, LLC Rebecca Stagg Nancy Steinhaus Kimberly R. Stephens Robert Stevenson Stillwater Fasteners LLC Kathleen and Robert Stockwell J. Stratton Patricia and John Sully Joan F Sussman James Swartz and Family Mark and Sandra Taylor Taylor Executive Radiator Service James J. Tedesco, III Telephonics Corporation Karen Tenenbaum Texas Health Presbyterian Hospital Thompkins Industries, Inc George Thompson Bruce Thorvig and Jemie Heiman Thorvig Gary and Lee Ann Thurston Catherine Tomman Jennifer L. Torneden Bill Towhey Dennis and Doreen Towhey Tracy Zweig & Associates, Inc. J.H. Treiber Jeanette Trepp Stephen and Janine Triano Triple “S” Services Inc. Linda and Bob Truman Carolyn Tuomala Amanda L. Turner Umberto’s of Wantagh Fermin Velasquez VerityPoint LLC Verizon Donna and Allen Villanueva Vision Graphics Visions Federal Credit Union Visteon Corporation Lisa Vong Barry Walker Robert and Deborah Wallin Walmart Stores Clarice M. Warrick Michael S. Weiner Jeff Weinstein Jill Welch Wells Fargo Community Support Campaign Bob Westbury Glenn Whiteman Martha Wiebers James Wiley Harry W. Williams Steven P. Wirth Camille Wojtaskiak Jay Wolfe Scott Wolfe, MD Lisa Zaccagnino David J. Zammiello Z-Coil Randy Zechman We gratefully acknowledge our generous donors and thank you for your support. Please accept our apology if we have made any errors or omissions with your name or gift. If your listing requires correction, please contact Tracey O. Sperry, Director of Development and Research, at (800) 722-4673 or tsperry@scleroderma. org. We will correct our records immediately. Scleroderma Foundation 2011 Financials Unrestricted Revenues, gains and other support Contribution revenue Bequests Special events, net Investment income Chapter revenue Other income Net assets released from restrictions: Satisfaction of program expenses Total revenues and other support Net realized and unrealized loss on investments $1,513,431 830,954 203,718 45,446 2,440,649 20,528 Total expenses - program services Expenses - Supportive Services Fundraising General and administrative Total expenses - supportive services Total expenses 465,363 10,036 400 63,714 - - - 2011 Totals Contribution revenue $1,978,794 $840,990 $204,118 $109,160 $2,440,649 $20,528 Speccial events, net 5,934,141 (399,902) - 5,594,239 75,827 - 849,686 - 6,443,925 (324,075) 1,605,399 3,279,647 - - 1,605,399 3,279,647 4,885,046 - - 4,885,046 116,250 335,882 - - 116,250 335,882 452,132 - - 452,132 5,337,178 - - 5,337,178 - 1,106,747 Change in net assets 1,370,822 Net assets, beginning of year 5,115,822 1,697,000 1,542,675 8,355,197 $6,486,644 $1,432,925 $1,542,375 $9,461,944 Net assets, end of year Revenue (264,075) Bequests Investment income Chapter revenue Other income (879,415) 6,708,000 Expenses - Program Services Research and education Support and advocacy Permanently Restricted 879,415 773,859 Total revenue, gains, and other support Temporarily Restricted Net realized and unrealized Research and education Support and advocacy Fundraising Expenses Scleroderma Foundation 2010 Annual Report | 29 National Leadership Board of Directors Joseph Camerino, Ph.D., Chair Carol Feghali-Bostwick, Ph.D., Vice Chair Cos Mallozzi, Treasurer Mary Blades Marie Coyle Kerry Hall Lee Roy Jones Robert Kacick Greg Marion Robert Slappey Medical Advisory Board National Staff John Varga, M.D., Chair Frank Arnett, M.D. David Badesch, M.D. Carol Black, M.D. Philip Clements, M.D. Michael Ellman, M.D. Vincent Falanga, M.D. Daniel Furst, M.D. Barry Gruber, M.D. Sergio Jimenez, M.D. Maureen Mayes, M.D., M.P.H. Janet Pope, M.D. Arnold Postlethwaite, M.D. Lewis Rubin, M.D. Richard Silver, M.D. Virginia Steen, M.D. Victoria Werth, M.D. Fredrick Wigley, M.D. Robert Wise, M.D. Robert J. Riggs Chief Executive Officer Mary Ann Berman Office Assistant Sue Bourn Director of Finance and Administration Ryan Burrill Programs and Services Coordinator Kerri Connolly Director of Programs and Services Shenna Gianetta Executive Assistant Laura Koumarianos Accounting Assistant Linda Norris Database Administrator Christina Relacion Communications Manager Tracey O’Connell Sperry Director of Development and Research Anne Sweeney Chapter Coordinator Maureen Zuluaga Database Administrator The work of the Scleroderma Foundation could not reach the people who need our assistance most without the tireless efforts of our volunteers and staff in chapters across the countr y. C H A P T E RS B Y S T AT E California Northern California Chapter Southern California Chapter Greater San Diego Chapter Colorado Colorado Rocky Mountain Chapter Connecticut Tri-State Chapter Delaware Delaware Valley Chapter District of Columbia Greater Washington, D.C. Chapter Georgia Georgia Chapter Florida Southeast Florida Chapter Illinois Greater Chicago Chapter Indiana Greater Chicago Chapter Iowa Greater Chicago Chapter Maine New England Chapter Maryland Greater Washington, D.C. Chapter Oregon Oregon Chapter Michigan Michigan Chapter Western Pennsylvania Chapter Massachusetts New England Chapter Minnesota Minnesota Chapter Missouri Missouri Chapter New Hampshire New England Chapter Nevada Nevada Chapter New Jersey Northern New Jersey – Tri-State Chapter Southern New Jersey – Delaware Valley Chapter New York Tri-State Chapter Ohio Ohio Chapter Oklahoma Oklahoma Chapter Pennsylvania Eastern Pennsylvania – Delaware Valley Chapter Rhode tEXTIsland hERE. New England Chapter South Carolina South Carolina Chapter Tennessee Tennessee Chapter Texas Texas Bluebonnet Chapter Vermont New England Chapter Virginia Greater Washington, D.C. Chapter Washington Washington Evergreen Chapter Wisconsin Greater Chicago Chapter Scleroderma Foundation 2010 Annual Report | 31 Scleroderma Foundation 300 Rosewood Drive, Suite 105 Danvers, MA 01923 800-722-HOPE (4673) www.scleroderma.org www.facebook.com/sclerodermaUS www.twitter.com/scleroderma