A N N U A L R E P O R T

American Brain Tumor Association 2 0 0 8-2 0 0 9 A N N U A L R E P O R T

Contents Message from the Executive Director.................................. 1 Research Highlights.............................................. 2 Patient Services Highlights......................................... 4 Event Highlights................................................ 5 Financials Statement of Financial Position.................................... 6 Statement of Activities.......................................... 7 Charts and Graphs............................................. 8

First and Lasting Impressions As a newcomer to the brain tumor community, I was impressed to learn that the American Brain Tumor Association was the first national nonprofit organization dedicated solely to promoting brain tumor research while providing patients and their families with care and treatment information and resources. I was impressed with how well respected the ABTA is for its commitment to advancing brain tumor research, for providing desperately needed support and information to brain tumor patients and their families, and for being a trusted steward of funds raised to advance brain tumor knowledge and understanding. I was impressed with the ABTA s committed Board of Directors, distinguished Scientific Advisory Council, dedicated staff, and legions of passionate volunteers across the country whose events (more than 100 last year) help fund ABTA s research initiatives and patient services as well as raise awareness of brain tumors. For more than 35 years, ABTA has supported young, talented researchers working to improve brain tumor diagnostics and treatment. Many of these scientists have contributed to the significant advances in brain tumor care that have occurred over the past decade. Many have gone on to mentor new researchers and to lead some of the nation s most prestigious brain tumor centers, ensuring a continued scientific commitment to finding a cure. Our Research Awards Program would not be possible or nearly as successful without the support and participation of the nation s leading brain tumor researchers and institutions. With their continued engagement, advancing brain tumor research, as well as the careers of young scientists, will remain a top ABTA priority. The more I learn about the need for brain tumor education, information and support, the more impressed I am with the range of services delivered daily by the ABTA s licensed health care professionals. We are truly helping patients and families to better understand a diagnosis or treatment, and to better navigate the complexities of our health care system. I am fortunate to be leading an organization with an inspired mission, solid foundation and sound reputation. Even in these most uncertain of economic times, we can look forward with confidence that this organization will continue to have a positive and lasting impression among all of those we serve and whose lives we touch. Elizabeth M. Wilson Executive Director 1

Committed to Advancing Brain Tumor Research For more than 35 years, the American Brain Tumor Association has supported young, talented researchers working to improve brain tumor diagnostics and treatment. These scientists have contributed to the significant advances in brain tumor care over the past decade. Many American Brain Tumor Association Fellows have gone on to mentor new researchers and to lead some of the country s most prestigious brain tumor centers, ensuring an ongoing scientific commitment to brain tumor research. Last year, the American Brain Tumor Association supported 50 medical researchers. The grants were awarded through four primary programs: Grants Encouraging Career Development Medical Student Summer Research Fellowships $2,500 summer laboratory experiences for talented medical students. Seasoned brain tumor researchers select appropriate students to receive the Fellowships, and oversee each student s work. Basic Research Fellowships -- $80,000, two-year awards that support the salaries of young researchers entering the field of brain tumor research. Translational Grants -- $50,000, one-year awards for researchers working to move projects from the laboratory to patient testing. Often these awards support the collection of the data necessary to secure larger, government or other grants. Small Projects Grants -- $50,000 awards supporting additional data collection for small research projects. The American Brain Tumor Association was one of the earliest supporters of my research which laid the groundwork for future contributions made to brain research by our laboratory. Additionally, I had the pleasure of mentoring several medical students and fellows over the years that were supported by the association. Their seed money has gone a long way toward expanding our understanding of brain tumors and eventual improvements in treatment Jeffrey Bruce, M.D., co-director of the Brain Tumor Center, Columbia University Medical Center; 1990-1992 American Brain Tumor Association Research Fellow Biennial Course on Molecular Mechanisms in Brain Tumors A week-long seminar held at Cold Spring Harbor Laboratory, offers a clinical overview of brain tumors and trains scientists in molecular biology techniques as applied to brain tumor research. Etiology/Epidemiology Grants Central Brain Tumor Registry The Central Brain Tumor Registry, led by world-renowned epidemiologists and neuro-pathologists, is charged with compiling and ensuring the existence of data on incidence (the number of people diagnosed each year) of both benign and malignant brain tumors. Excellence in Epidemiology Award Given through the Society for Neuro-Oncology, this award recognizes contributions in the area of brain tumor epidemiology 2

I have been so pleased to be a part of this organization, and appreciate all the support the American Brain Tumor Association has given to me and my program over the years. (Because of the American Brain Tumor Association research program) many more young researchers are interested in the field of brain tumor research, and are passionate about the care of patients. Nina A. Paleologos, M.D., Director of the Neuro-Oncology Program, NorthShore University HealthSystem, associate professor of neurology, University of Chicago Medical School, and 1990-1991 American Brain Tumor Association Research Fellow Committed to Advancing Brain Tumor Research Quality of Life and Symptom Management Grants Neuro-oncology Nursing Research Grant Administered through the Oncology Nursing Foundation of the Oncology Nursing Society, nurse researchers are offered up to $10,000 in support of research exploring the effects of a brain tumor on patients and their families. Quality of Life Research Grant Administered by the Brain Tumor Network, this annual $10,000 award seeks to improve the quality of life of people living with a brain tumor. The studies encourage researchers in their efforts to understand the needs of people affected by brain tumors. Awards that Recognize Achievement Young Investigator Award, provided through the American Association of Neurological Surgeons (AANS) Joint Section on Tumors. Young Investigator Award, provided through the Congress of Neurological Surgeons (CNS) Joint Section on Tumors. Excellence in Basic Research Award, provided through the Society for Neuro-Oncology. Oligodendroglioma Experts Gather in Chicago to Outline Research Needs, Priorities In February 2009, the American Brain Tumor Association hosted an Oligodendroglioma Roundtable in Chicago. The meeting brought together 13 distinguished researchers from the United States, Canada and the Netherlands to set future research priorities for oligodendroglioma brain tumors slower growing tumors diagnosed in approximately 2,000 individuals each year. The meeting was made possible through a generous donation from the estate of Louise C. Jacobs, as a memorial to her grandson, Matthew. Approximately 2,000 people per year are diagnosed with an oligodendroglioma brain tumor. Although an oligodendroglioma is part of the group of brain tumor referred to as gliomas primary brain tumors arising from the glial, or supportive tissue of the brain the outcome for subtypes of this tumor can have a much different course than that of other gliomas. Research commonly focuses on the more common glioma called glioblastoma, a particularly aggressive brain tumor affecting larger numbers of the population. 3

Dedicated to Supporting Brain Tumor Patients and their Families Whether it s through a call to our patient telephone line 1.800.866.ABTA, an e-mail to info@abta.org, or a visit to www.abta.org, patients, families and caregivers trust the American Brain Tumor Association to provide compassionate support and the most current, comprehensive brain tumor information. The American Brain Tumor Association offers a team of licensed health care professionals to provide support and information; the comprehensive booklets, the Brain Tumor Primer, the Brain Tumor Dictionary and Living with a Brain Tumor; brochures on different brain tumor types and treatments; and listings of financial, physician, support group and other resources to help individuals and families to better cope with the challenges that can accompany a brain tumor diagnosis. In addition, the ABTA sends out its newsletter twice a year, and provides monthly electronic communications and regular updates to the Web site on the latest in brain tumor research and care. In 2008-2009, we refreshed the look of our newsletter, renaming it Headlines, as well as our publications and electronic communications. The new publications offer a lighter, brighter look, while still providing the most comprehensive, insightful updates on brain tumor research, treatment and care. We also revised three key publications: Organizing and Facilitating a Support Group, Conventional Radiation Therapy and Ependymoma; added a Brain Tumor News section to the Web site for posting the latest articles on brain tumor treatment and care; and created a two-sided book mark that succinctly explains the ABTA, its mission and key initiatives in research and patient-family education and support. The bookmark is easily shipped and widely distributed at events throughout the country. To help us further improve our information, resources and communication tools, we asked our Web site and newsletter readers to provide us with feedback on our online content and the ease of use of our Web site. We also asked readers about the challenges they face in obtaining optimal brain tumor care. We asked Web site visitors about the effectiveness and ease of use of www.abta.org, the quality of information at the Web site, and user interest in additional Internet and social media tools. More than 1,100 visitors responded. Among the survey results: 96 percent of respondents said they found what they needed on our Web site. 93 percent of respondents found the Web site descriptions/explanations of terms to be good or excellent. 62 percent of Web site visitors found the Brain Tumor News section of the abta.org Home page to be very helpful, followed by Tumor and Treatment, 57 percent; Research Progress, 54 percent; and Care and Support, 44 percent. 58 percent of visitors came to www.abta.org through a Web search. 43 percent visit our Web site at least monthly; 25 percent, weekly or more. 35 percent said tumor information was the key reason for visiting the site, followed by Symptoms 19 percent. We also asked our newsletter readers to tell us what challenges they face in obtaining optimal patient care. A list of topics of concerns, based on the most frequent requests for information and support at the American Brain Tumor Association, was presented to readers in a survey. Of the 431 readers who responded: 13 percent chose difficulty affording the copays/co-insurance for hospitalization expenses, and difficulty accessing transportation to medical appointments as challenges to optimal treatment and care. 12 percent selected difficulty affording the copays for prescription drugs 11 percent, difficulty with insurance company denial of coverage for recommended treatments, and purchasing health insurance due to pre-existing conditions. 8 percent chose lack of access to a second opinion due to travel expenses, difficulty purchasing health insurance because of the cost of coverage, and no neurosurgeon with brain tumor expertise within a given geographic area. 4

ABTA 2008-2009 ANNUAL REPORT Inspired by our Donors and Volunteers The American Brain Tumor Association is grateful for the tremendous dedication and generosity of thousands of individuals who host and participate in fundraising events throughout the country each year. Many of these events are organized by brain tumor patients and their families who are committed to supporting our mission. Last year, more than 100 fundraising events raised nearly $2 million for our research funding and patient services programming. Event highlights included: The 5th Annual Humor to Fight the Tumor event held on Sept. 27, 2008 in Minneapolis. The American Brain Tumor Association Marathon Team participating in their third Chicago Marathon on October 12, 2008 Bringing JAG Fund s total American Brain Tumor Association contributions to $1,000,000. The Joel A. Gingras Fund s annual golf outing, dinner dance and tube float has raised more than $1,000,000. Now in its 4th year, our annual Path to Progress 5K Run-Walk along Chicago s Lakefront is one of Chicago s fastest growing charity run-walks with more than 5,000 participants raising nearly $800,000. 5

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INCOME $4,067,610 NET INVESTMENT INCOME 7% FUND-RAISING ACTIVITIES 33% CONTRIBUTIONS 60% EXPENDITURES $3,808,372 MANAGEMENT AND GENERAL EXPENSES 11% FUND-RAISING 14% PROGRAM SERVICES 75% 8