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Neoplasia. May 2001; 3(3): 264–265.
PMCID: PMC1505594

The National Brain Tumor Foundation: Giving Help, Giving Hope

“I recently celebrated an anniversary. It was five years ago that I was diagnosed with a brain tumor, and based on statistics, given a rather dire prognosis. One, of course, becomes far more conscious of the moments in life and how quickly they flit past when confronted with one's own mortality.”

Bart, brain tumor survivor.

George Gershwin had one. So did Slim Pickens and Gene Siskell. Elizabeth Taylor braved the pages of Life magazine displaying her shaved head to a public eager for information. What all these famous people had in common was a brain tumor. And despite the fact that more than 100,000 in the United States and Canada are diagnosed with a brain tumor each year, this disease has received little attention. This may be due to the scary images associated with brain tumors or the belief that there is no way to treat a brain tumor. Yet today's patients, unlike George Gershwin and Slim Pickens, can take advantage of better diagnostic techniques as well as more treatment options. And just as important, the growing strength of a community of brain tumor survivors and organizations has helped to provide hope and support to people who in the past had no where to turn.

Brain tumors can affect anyone, yet the greatest incidence appears to be in people 65 years and older. They are the second leading cause of cancer death for children under age 19 and the third leading cause of cancer death for young adults ages 20 to 39. Metastatic brain tumors (cancer that spreads from other parts of the body to the brain) occur at some point in 20% to 40% of the general cancer population.

In the United States, whites have higher rates of glioma but lower rates of meningioma than blacks. And the rate of malignant brain tumors in Japan is less than half the rate in Northern Europe.

Yet, despite some of these differences, it is still not clear what causes brain tumors and who they will affect. Researchers have looked at genetics, viruses, diet, pesticides, certain occupations where workers are exposed to carcinogenic or toxic substances, petrochemicals, and electromagnetic fields, to name a few. Cell phones have recently received a lot of media attention as a possible cause of brain tumors. Despite all these studies, it is still difficult to say what definitively causes a brain tumor.

What we do know is that a brain tumor is a collection of cells that grows out of control from the normal cell growth.

Also called a neoplasm, growth, mass or lesion, a brain tumor is either primary or secondary. There are over 100 different types of brain tumors, both malignant and benign, with some occurring primarily in adults and others affecting children.

Primary brain tumors develop and generally remain in the brain. Secondary brain tumors, or metastatic brain tumors, develop elsewhere in the body and spread to the brain. The majority of metastatic brain tumors originate in either the lung or breast, yet colon cancer, kidney cancer, and melanoma can also metastasize to the brain in adult patients.

Because of the need for better treatment and the growing incidence of brain tumors, the National Brain Tumor Foundation (NBTF) was founded in 1981 initially to raise funds for research. It quickly became clear though, that patients and their families were searching for information and support as well. To meet this need, NBTF began providing a wide variety of services such as printed information and articles, a quarterly newsletter, and a national listing of support groups. The Patient Services Department has continued to grow and now offers, in addition to the above information, teleconferences, caregiver programs, a Support Group Facilitator Newsletter, a Medical Nurse Specialist, patient pamphlets in English and Spanish, a web site with information, chat rooms and bulletin board, and regional and local conferences. In fact, NBTF sponsored the first-ever brain tumor conference in 1990, which attracted over 400 patients, family members, and healthcare professionals. At our sixth national conference in Los Angeles in March 2000, almost 1000 participants attended — part of NBTF's continuing mission to raise awareness about brain tumors and provide support to even more patients and their families, including those in underserved populations.

In addition, NBTF has continued to raise funds for research and to expand the amount and type of grants offered to researchers. The NBTF research programs are designed to fund those drugs and therapies that have the highest likelihood of success and will be available for use by brain tumor patients as quickly as possible. NBTF looks for research projects that will progress from the laboratory to practical patient applications. Generally we fund portions of studies that are already underway and have shown promise in improving traditional therapies or creating truly effective new methods.

Past recipients of NBTF awards have been funded for a variety of different research projects on subjects such as: Tissue Biomarkers and Their Role in Angiogenesis in Glioblastomas, Molecular Genetic Markers of Low Grade Gliomas, Evaluation of Monocyte Chemoattractant Protein-1 as a Radiation-Induced Cytokine, Brain Tumor Distribution of CPT-11 in a Transgenetic Mouse Model, and Genetic Predictors of Chemotherapy and Survival in Mixed Gliomas. A complete list of past projects can be found on the NBTF web site at www.braintumor.org.

This year, NBTF has increased the number and type of grants that we offer. Funding is now provided for quality of life research and pediatric research. In addition, NBTF is one of the first brain tumor organizations to begin funding complementary and alternative medicine research in the field of neuroscience and neuro-oncology

The NBTF is proud of its long association with researchers and health care professionals in providing funding for research and giving help and hope to patients and their families. For more information about NBTF's research program or patient services please visit the NBTF web site at www.braintumor.org or call 1-800-934-2873.

Contact NBTF: www.braintumor.org.

Patient Information Line is: 800.934.CURE(2873)


Articles from Neoplasia (New York, N.Y.) are provided here courtesy of Neoplasia Press

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