LEUKEMIA LYMPHOMA MYELOMA 2005 Annual Report our mission Cure leukemia, Over its history, the Society has been the recognized leader in the fight against leukemia. Our name change to The Leukemia & Lymphoma lymphoma, Society in 2000 was simply perception catching up to reality. The Hodgkin’s Society’s objective is to find cures for all blood cancers, and to be disease and the leading resource for patients battling all of these cancers. myeloma, and This year, the Society took the first step in making access to specific improve the information and services simpler for patients with these cancers. quality of life We developed a color-coding system for the three main categories of blood cancers: Our new signature colors are green for leukemia, of patients and gold for lymphoma and blue for myeloma. Any information that their families. is relevant to all the diseases is coded burgundy. All print materials prepared for patients during this year reflect the new system, making access to important information and resources more efficient. You’ll also see our new colors in such e-newsletters as LeukemiaLinks, LymphomaLinks and MyelomaLinks. The next step will be to extend the new system to other venues, including access to information on the Society’s Web site. This year’s Annual Report displays the new colors with pride. They represent the ongoing efforts to constantly improve on the ways the Society serves and supports patients and those who love and 2 005 | care for them. AN N U AL R EPOR T leadership message We are fortunate to be able to report that fiscal year 2005 was a banner year for the Society in many ways. Let’s start with revenue. The Society raised $218.6 million through private donations, corporate gifts and our various fundraising campaigns – that’s $38 million more than we raised in fiscal 2004. Our already successful campaigns such as Team In Training® and Light The Night® Walk were even more productive in fiscal 2005 (for information on individual campaigns, please turn to pages 12 and 13 of this report). And our donor development initiatives have shown impressive growth – a 38 percent increase in revenue over last year, to more than $25 million in fiscal 2005. The big story of the year is not just our success as fundraisers, but also our success as prudent stewards. Since its founding in 1949, the Society has been steadfast in pursuing its mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. In fiscal 2005, we were able to strengthen our commitment, supporting four new Specialized Center of Research (SCOR) grants and renewing two others – for a total of six SCORs awarded in the fiscal year, a Society record. More money for the best research globally means more research successes; and more research successes mean greater hope for the hundreds of thousands of patients battling leukemia, lymphoma and myeloma. Finally, The Leukemia & Lymphoma Society of Canada became part of the Society effective July 1, 2004, and this year’s annual report is the first to include our Canadian operations. We are pleased to be serving the needs of patients and families in Canada as well as in the United States. Until the day comes when we can finally say we’ve defeated blood cancers, the Society will be here to help guide patients and their families on the cancer journey. In fiscal year 2005, the Society had 2.5 million contacts with patients, caregivers and healthcare professionals, through our Web site, Information Resource Center, education programs and chapter-based outreach. Yes, we made great progress in advancing our mission in fiscal 2005, thanks to the dedicated volunteers, employees, donors and researchers who helped make the year so successful. We are looking forward to doing even more in fiscal 2006! 2 005 | Dwayne Howell John M. Kamins AN President & CEO Chairman N U AL R EPOR T 2 3 patient services In 2005, the Society offered new educational and support 2005 leukemia programs and services to meet the needs of patients battling AML, CML, ALL and CLL. highlights A small sample of new Society programs, services and materials follows: research I New Approaches to CLL: The Changing Treatment Landscape, featured world-renowned hematologist/ In the fight against blood cancers, leukemia research to Gleevec experienced a complete hematological oncologist Michael Keating, M.D., The University has arguably led the way, with major innovations in remission. Dr. Sawyers, a SCOR team leader, credited of Texas M.D. Anderson Cancer Center. A better the development and testing of targeted therapies earlier Society-funded research on Gleevec resistance understanding of how leukemia cells work and grow in just the past five years. Gleevec®, the first product with his ability to move ahead with recent, highly has led to targeted therapies for individual patients, of this research, was only the beginning. This Society- successful clinical trials. and more refined diagnostic tests have enabled doctors funded breakthrough has led to additional studies that I Varsha Gandhi, Ph.D., The University of Texas M.D. to devise smarter treatment strategies for all patients. are further advancing treatment options for patients with Anderson Cancer Center, received a Translational In this program, Dr. Keating discussed the latest news chronic myelogenous leukemia (CML) and for those Research Program (TRP) grant from the Society about CLL, as well as clinical trials that might lead battling acute myelogenous leukemia (AML) and acute for her work, DNA Independent Strategy to Target to even better treatments in the future. and chronic lymphocytic leukemia (ALL and CLL). CLL. Many types of leukemia are caused by increased They include: I Medical Update on AML: New Treatments and Blood cell proliferation and are frequently treated with drugs Stem Cell Transplantation, was jointly presented by the I The Society funded a new Specialized Center of that target DNA. In contrast, CLL expansion is more Society, the National Bone Marrow Donor Program and Research (SCOR) grant, Targeted Inhibition of often associated with decreases in leukemic cell death. CancerCare. The program featured Selina Luger, M.D., Oligomeric Translocation Products in AML, CML and Dr. Gandhi’s research focuses on a chemotherapeutic University of Pennsylvania Cancer Center, who presented ALL, led by John Bushweller, Ph.D., the University of agent called chlorinated adenosine (8-CI-Ado), an overview of AML; and J. Douglas Rizzo, M.D., Medical Virginia. The five-year project will focus on new which has been shown to cause CLL cell death in College of Wisconsin, who discussed treatment options, therapies for Gleevec-resistant CML patients and laboratory models by decreasing energy stores and including marrow and blood stem cell transplantation. AML and ALL patients who do not respond to the production of new RNAs, both critical to cell standard therapies. This SCOR expands on current survival. Dr. Gandhi will now study what happens I CML: Ask the Expert, a telephone education program, knowledge about the specific genetic defects that when 8-CI-Ado is introduced into fresh peripheral, featured Stephen D. Nimer, M.D., head of the Division create malignancies in blood cells that harbor them, (circulatory) blood cells obtained from patients of Hematologic-Oncology, Memorial Sloan-Kettering and on the successful application of Gleevec to with CLL. The objective is to advance this agent Cancer Center. The entire one-hour session was devoted many patients with CML. to clinical trials. to Dr. Nimer fielding questions from the audience, a format of great value to participants. I Charles Sawyers, M.D., UCLA School of Medicine, presented findings at the 46th Annual Meeting I New Discoveries in CML: This teleconference featured of the American Society of Hematology (ASH) for two distinguished experts from M.D. Anderson: Francis J. a new agent, BMS-354825. In clinical trials of this Giles, M.B., M.D., F.R.C.P.I., F.R.C.Path, professor of agent, 86 percent of early-stage CML patients resistant medicine, Department of Leukemia; and Moshe Talpaz, M.D., professor of medicine, Department of Experimental Therapeutics. They discussed the latest information on CML therapies and the future direction of CML We’re currently testing a new agent, hunter’s story research, and they answered questions from the BMS-354825, in clinical trials among On the Friday afternoon when the doctor audience about CML clinical trials, newer treatments “ and other topics of interest. CML patients resistant to Gleevec, and it shows announced that our 10-month-old son had “leukemia, I was very frightened even though I An updated booklet, Acute Lymphocytic Leukemia, tremendous promise for getting patients I wasn’t 100 percent sure what leukemia was. provides information on this cancer, current treatments, 2 into complete hematological remission. It was a great reassurance when, by Monday new research directions and emotional aspects 005 | Earlier Society-funded research afternoon, the Society had contacted our home of managing the disease. and was helping us cope with the diagnosis. They AN we did on Gleevec resistance followed up regularly and continued to supply N enabled us to get to this point. information as my son’s situation changed. U AL R Charles Sawyers, M.D., UCLA School of Medicine” • Lori Ruderman, mother of 6-year-old Hunter, ” EPOR leukemia survivor. T 4 5 2005 lymphoma highlights vaithee’s story The Society has helped us in so many ways — research from financial support for expenses not covered patient services “by health insurance to tickets to baseball games Below are just three examples of outstanding against tumor cells. Ongoing studies in mice to keep our spirits up. Through the First Connection A number of new educational and support programs Society-sponsored lymphoma research, including will determine how these proteins function program I was able to talk to someone who is were developed this year to answer the needs of laboratory studies, clinical trials and a collaborative in the immune system.