ON EVERY LEVEL S.L.E. LUPUS FOUNDATION ANNUAL REPORT 2007 Here for People with Lupus and their Families and Friends On the ground On the Web On the path to discoveries On Capitol Hill to speak for all those with lupus and those who care for them ON EVERY LEVEL 1 The S.L.E. Lupus Foundation’s 2007 Annual Report establishes the solid national and international outreach that our organization is proud to conduct on behalf of people with lupus, their families, and friends. With your extraordinary support in 2007, we were able to reach, impact, and help more people than ever before. Whether on the ground, especially within our most vulnerable communities, on Capitol Hill, and increasingly, online, we have been able to expand services, create more support, S.L.E. LUPUS foundation educate more healthcare professionals, and advance a comprehensive lupus mission throughout New York and Los Angeles. And through our research programs, our work is now national and international as well. Vigorous leadership, the hallmark of the Foundation, is nowhere more evident than in the innovative research we fund to prevent, treat and cure lupus. With your commitment, the S.L.E. Lupus Foundation conducts the nation’s largest and longest standing New Investigator Program to develop new talent for lupus research. Each year, young PhD and MD scientists compete for three year grants to support their training—grants that allow them to learn and work in the best lupus and immunology labs in the nation. And in Shanghai, in 2007, we supported 20 scholarships for international fellows—bringing our program worldwide. As the primary founder and leading partner of the Lupus Research Institute (LRI), the Foundation anchors the scientific breakthroughs and extraordinary progress that LRI funded scientists achieve through bold innovative approaches to solving the problems of this complex disease. With 85 funded studies in 51 academic centers across 20 states, our novel research initiative now stands at the forefront of scientific discovery in lupus. By consistently pushing the frontiers of new science, we are building the research pipeline, and working to promote the clinical trials so necessary to bring safe and effective new treatments to lupus patients. On every level, we are pleased to report a year of solid achievement and documented growth— especially in our nation’s capital as we applaud the start of the new Trans-Institute Research Plan for Lupus at the NIH, a program we are proud to have initiated and advanced through the United States Congress. Our 2007 report calls everyone to Get into the loopTM and visit our vibrant interactive lupus community. Sign on to find the latest news updates and information, give us your feedback, create new dialogues, and expand awareness and involvement as we seek a life without lupus. Please continue to be with us in 2008—online and on the ground—at Galas and events, and at education and research conferences—in New York, Chicago, Los Angeles, and Washington, DC. Your increased participation and your remarkable generosity make this progress possible. Thank you. Richard K. DeScherer, President Margaret G. Dowd, Executive Director 2 3 ServING PEOPLE WITH LUPUS AND THEIR FAMILIES AND FRIENDS THROUGH DIRECT CARE, SOLACE, ON THE GROUND AND SUPPORT “Tell us what’s going on. If you or someone in your family has lupus, we’re here for you—right now.” One-on-One CoUnselING AND InTervenTIon IN TIMes of CrISIS took place throughout New York’s boroughs and in southern California homes and offices and hospitals. SUPPorT GroUPS connected people with lupus where they live—in every New York borough and Los Angeles. AssISTANCE was given in securing food stamps, SSI, SSD, and other Entitlement Programs. Making the difference in getting by ReferrAls were made to physicians and other help. Knowing the community specialists, making the connections that heal EMerGenCY GrANTS Tens of thousands of dollars granted in ‘07 helped to pay for medical expenses and other critical needs. Changing more than just the bottom line And ’07 IN BrooKlyn… Third Lupus Outreach Center Opens its Doors At Long Island University’s Wellness Athletic and Recreation Center as of January, Brooklyn’s new outreach center adds to thriving cooperatives in Northern Manhattan and the Bronx. 4 5 IN LOS ANGELES AND ACROSS SOUTHERN CALIFORNia… Learning about the latest research and giving the compassion and care people with lupus need through educational programs, workshops for professionals, monthly support groups at Cedars-Sinai Medical Center, more. LIFTING UP THE LIVES OF CHILDREN AND FAMILIES THROUGH DIRECT HELP MAKING IT HAPPen AT CAMP SUnsHIne above LUPUS LA SCIenTISTS (MCMAHon, WAllACE) Families had a chance below LA PATIenT ED GroUP to travel and stay at the Maine retreat for a respite from the stresses of living with a chronic illness. Kayaking, games, sports, crafts—and counseling services—provided the families a chance to capture memories and the buzz of summer camp. LETTING KIDS BE KIDS Dozens of kids in the New York area were able to enjoy the activities that make childhood so special, from after-school music lessons to sports to classes in dance and art. 6 7 MAKING LUPUS SOMETHING PEOPLE KNOW ABOUT CenTRAL PARK Goes ORANGE for 1ST-Ever LUPUS PUMPKIN FesTIVAL! Thousands carved pumpkins, slipped on awareness bracelets, consumed treats and ON MULTIPLE LEVELS talked about lupus. Fall 2007’s Hospital Tour looped through the five boroughs, educating hundreds about lupus symptoms, clinical trials, management strategies, and research advances. Visitors to LupusNY.org from New York and around the world listened in through Podcasts of the talks from top lupus experts. NEW BI-CoASTAL AND BILINGUAL MATerIAls • Additions to What You Should Know About Lupus brochure series • Newsletter and website updates on breakthroughs in lupus research strategies for coping with the disease GeTTING Everyone InTO THE LOOP and involved in the fight against lupus! 8 9 VIBRANT ONLINE SOCIAL NETWORKING COMMUNITIES LINK TEENAGERS, COLLEGE STUDENTS, YOUNG ON THE WEB PROFESSIONALS, AND OTHERS TO EACH OTHER— AND TO US. Our web sites—appealing and accessible—link us to people at home, in offices and schools, at hospitals and clinics, and elsewhere across the nation and the world… LUPUSNY.orG LUPUSLA.orG See the new look of 2007! LUPUsTrIAls.orG Our powerful collective voice on the need for clinical trial participation through the National Coalition of state and local lupus organizations “Patients’ Voice for Lupus Research” launched in spring 2007 and gets more than 3,000 visitors monthly. LUPUSReseARCHInsTITUTE.orG We are proud founding members and leading supporters of the country’s only nonprofit organization singularly devoted to novel research in lupus. 10 11 S.L.E. LUPUS FOUNDATIon NEW InvesTIGATor ProGRAM It’s the nation’s largest program dedicated to the development of new scientific talent in lupus research. BUILDING BRIGHT YOUNG TAlenT IN LUPUS SCIenCE for ON THE PATH TO DISCOVERIES Over 30 YEArs …in New York …in Los Angeles beginning in 2008 … and around the world, sponsoring 20 young investigators to participate in Shanghai’s International Lupus Congress in May 2007. “These young investigators represent the future of global research in lupus.” —Lupus LA founder, Daniel J. Wallace, MD. With financial support and invaluable mentoring direction at a key juncture in their early careers, young scientists can stay engaged in the exploration of lupus and autoimmunity. THE FIFTeen “NEW InvesTIGATors” aT WorK IN 2007 INCLUDE: • 2007 Basic Science Fellowship recipient Kevin Nickerson, PhD, at Yale University— examining Toll-like receptors in prompting and promoting lupus. • 2007 Scientist Fellowship recipient Antigoni Triantafyllopoulou, MD, at the Hospital for Special Surgery—addressing a question of central importance in lupus nephritis: what mechanisms are at the root of renal inflammation and the progression to fibrosis and renal failure? • 2007 Career Development award recipient Venkatesh Jeganathan, PhD, at the Feinstein Institute for Medical Research—testing DNA-targeted therapies that hold promise for modulating the progression of lupus without suppressing the entire immune system as present agents do. 12 13 CHAMPION OF NOVEL LUPUS RESEARCH, PIONEERING DISCovery THE S.L.E. LUPUS FOUNDATIon • Crucial in founding the Lupus Research Institute in 2000 • A partner in making it happen and keeping it going • Driving the Institute’s extraordinary successes 85 Novel Research Grants to researchers at 51 medical centers in 20 states Breakthroughs are being made in genetics, biomarkers, and in potential treatment strategies to prevent and halt the destruction waged by the immune system gone awry. The Foundation is helping to infuse over $35 million into lupus research through federal government and other sources as Lupus Research Institute investigators blaze new paths to discovery, prove their hypotheses, and win ongoing funding. Smart Risks Producing Solid Results 14 15 TELLING CONGRESS ABOUT LUPUS 2007 ADvoCACY VICTorIes! The Future Directions of Lupus Research report finalized in August 2007 ON CAPITOL HILL now guides the nation’s investment in lupus research through the National Institutes of Health. “Through input from various stakeholders the current state-of-the- science was considered in identifying the most pressing needs and opportunities that will help propel the field forward. The ultimate goal of this plan…is to continue to accelerate progress in lupus research to further improve quality of life of patients.” –Stephen I. Katz, MD, PhD, Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases As a leading member of the Lupus Research Institute’s National Coalition of state and local lupus organizations, we pushed hard and were instrumental in making this broad strategic plan a reality. Other messages delivered to House and Senate members—for you: • Be aware of lupus and the damage it can inflict on young women in particular.