About Children’s Brain Tumor Foundation
Research and Training
The Children’s Brain Tumor Foundation is committed to finding a cure for pediatric brain tumors. In its 15-year history, CBTF has awarded $4.8 million in grants to doctors and researchers at leading institutions throughout the U.S. for research on the causes of and treatments for pediatric brain and spinal cord tumors.
CBTF also funds fellowships in pediatric neuro-oncology to increase the supply of doctors with this focused expertise. In 2002, CBTF awarded grants to Columbia University, Duke University Medical Center, Texas Children’s Cancer Center, and Johns Hopkins School of Medicine. In addition to basic science research, special grants were awarded to the Central Brain Tumor Registry of the U.S., Children’s National Medical Center and The Children’s Hospital of Philadelphia.
Quality of Life Grants
Recognizing the importance of support services, CBTF awards “Quality of Life Grants” to support programs that improve the quality of life for tumor patients and their families. Recent grantees include Friends of Karen, Children’s Cause and National Coalition for Cancer, St. Jude Children’s Research Hospital and Beth Israel Medical Center.
Family Support Services
CBTF has developed a national support network for 26,000 families with a child diagnosed with a brain or spinal cord tumor. A licensed pediatric oncology social worker coordinates these national programs. CBTF’s free services include face-to-face meetings, telephone support (both individual and group), and a variety of special programs.
Families use the CBTF’s toll-free number (866-288-HOPE) for assistance of all kinds-community referrals for financial support, insurance coverage, and information on diagnosis, treatment, school re-entry, bereavement, survivorship and coping. Callers are often referred to other CBTF services and programs.
CBTF’s oldest support program is the Parent-to-Parent Network (P2P). P2P connects experienced parents who want to share their knowledge with parents who have a newly-diagnosed child. Bereaved families also receive support from a P2P volunteer.
Other CBTF-sponsored support programs include a free performance of the Big Apple Circus for pediatric patients and families and a much anticipated annual trip around New York Harbor aboard a vintage sailboat.
Knowledge is critical for families and patients facing the challenge of a brain tumor. CBTF’s user-friendly Resource Guide for Parents of Children with Brain and Spinal Cord Tumors (available in English and Spanish) is distributed free of charge to families, professionals and pediatric medical centers worldwide. It helps parents unravel medical language and procedures and provides advice on coping with hospitalizations, interruptions in school and social life, siblings and finances.
CBTF sponsors teleconferences presented by medical experts on topics of concern to tumor patients, their families and health professionals. Families can participate in the free teleconferences without leaving home. Each registrant receives a program schedule, instructions, information about the services offered by our agencies and back-up factual material about the topic.
Conference topics have included: Bereavement and Brain Tumors; The Impact of Childhood Brain Tumors on Siblings and Extended Family; Returning to School after Treatment for Childhood Cancer; Life after Treatment for Childhood Brain Tumor: Issues for Survivors; When Your Child Has a Brain Tumor: Latest Treatment Options in Surgery and Chemotherapy.
CBTF offers a newsletter, The Challenge, which supplies information about research, resources and events at CBTF. The newsletter includes a section written by and for children and young adults and a parent’s corner offering stories from a parent’s personal point of view. CBTF’s website, www.CBTF.org, is a one-stop information source.
CBTF is a charter member of the North American Brain Tumor Coalition (NABTC), a network of charitable organizations dedicated to eradicating brain tumors. NABTC has awarded over $20 million for brain tumor research, raises awareness of brain tumors and provides a strong public policy voice on behalf of patients with brain tumors. NABTC has testified before Congress in favor of research and access to new therapies, and it participates in proceedings at the Food and Drug Administration, National Institutes of Health and other federal agencies.
CBTF is also a charter member of the Alliance for Childhood Cancer, representing more than a dozen patient advocacy groups and medical and scientific organizations. Patient advocates-many of them cancer survivors or parents of children with cancer-are joined by oncology professionals - a unique alliance that brings concerned parties together to advance the interest of children with cancer.