Advocacy Forum

National Brain Tumor Foundation:
Giving Help, Giving Hope

by Robert Tufel, Director of Patient Services, National Brain Tumor Foundation

Libby Stevenson, NBTF board member and brain tumor survivor, speaking at a rally during Brain Tumor Awareness Week while North American Brain Tumor Coalition members, Bonnie Feldman and Larry Pizzi, look on.

Each year, more than 185,000 people in the United States are diagnosed with either a primary or metastatic brain tumor. The incidence of brain tumors has increased by 25 percent since 1973. While the causes of brain tumors are still unknown, treatment options and diagnostic techniques have improved. Patients are taking an increasingly active role in their own care and exploring all the options for treatment and support.

The National Brain Tumor Foundation (NBTF) was founded in 1981 by a group of patients and family members. Initially focused on supporting research, NBTF has expanded its mission to provide supportive and educational services to brain tumor patients and their families.

NBTF funds this promising research through a variety of mechanisms. Last year, we provided grants to research projects in the areas of blood stem cells and brain tumor vascularization, high-throughput analysis of gliomas, neural stem cell-based cytokine delivery, and nitric oxide and chemotherapy. We also provided grants for quality-of-life research projects for both children and adults with brain tumors.

NBTF also funds research projects through the American Association of Neurological Surgeons, the North American Brain Tumor Consortium, and New Approaches to Brain Tumor Therapy.

Last year, NBTF funded the first research grant for complementary and alternative medicine in the field of neuroscience for research on "Systemic Antioxidant and Oxidative Stress Levels and Associations with Nutrient Intake in Patients with Untreated Cerebral Glioma."

During 2002, NBTF will award more than $600,000 in research grants and expand our research projects to include epidemiology and radiation therapy.

Research is not the only area in which NBTF works to fight brain tumors. The Patient Services Department offers a wide variety of patient support programs in the belief that patients and their family members have the right to be informed about their condition and treatments. At NBTF we are constantly striving to provide the most up-to-date information and to be as responsive as possible to our patient constituency. As one patient stated, "Beginning with the National Brain Tumor Foundation's first conference in 1990, there's been a tremendous growth in sharing of information between patients and professionals. The Internet, conferences, support groups... all of these things have helped provide information to many patients and families."

Participants in Brain Tumor Awareness Week, sponsored by the North American Brain Tumor Coalition, gather in Washington, DC, and across the nation to advocate for the brain tumor community

Patients can also find more information through NBTF's Patient Information Line, national and regional conferences, contact with other patients and caregivers, Search (the quarterly newsletter), printed information, support groups, a medical advice nurse, a Web site (www.brain tumor.org), and teleconferences. In line with NBTF's mission, all NBTF material is available free of charge to patients by calling 800-934-CURE (2873).

In September 2002, we will be sponsoring our seventh National Brain Tumor Conference in conjunction with Barrow Neurological Institute and the University of Colorado Cancer Center. In keeping with NBTF's goal of providing the most up-to-date information to as many patients as possible, we will be video-broadcasting part of this conference among the three conference sites.

At NBTF we believe that it is crucial for researchers, health professionals, and patients to work together in fighting brain tumor disease. For patients, the work of researchers is of utmost importance and interest because it directly affects their lives. For health professionals and researchers, understanding the daily struggles of brain tumor patients gives meaning and significance to their work. NBTF strives to foster communication among these groups and find ways to treat and cure brain tumors.

For more information about the National Brain Tumor Foundation, please call 510-839-9777. For questions regarding the NBTF research grant program, please visit our Web site at www.braintumor.org or contact Robert Tufel, MSW, MPH, director of patient services, at tufel@braintumor.org.