INFORMATION & SUPPORT RESOURCES
This list of resources for brain tumor patients and their caregivers includes Internet links, organizations that provide specific support for caregivers, and books. Whether you have a simple question or are facing a major life crisis, you are likely to find support and assistance with these resources.
Neurosurgical Associates, P.C. (www.neurosurgicalva.com)
Duke Brain Tumor Center (www.cancer.duke.edu/btc/)
VCU Massey Cancer Center (http://www.massey.vcu.edu/patient-care/teams/brain-neurological/)
University of Virginia Cancer Center (www.uvabraintumor.com)
MD Anderson Brain & Spine Center (www.mdanderson.org/Care_Centers/BrainSpinal/)
Virtual Trials (www.virtualtrials.com)
OTHER KEY RESOURCES
Accelerate Brain Cancer Cure (www.abc2.org) Accelerate Brain Cancer Cure has a singular focus – to hasten the discovery of a cure for brain cancer. Accelerate Brain Cancer Cure inspires new hope for a cure by using a results-driven business model to bring more treatments to patients, stimulate research & development and otherwise support the accelerated development of new therapies for brain cancer.
Acoustic Neuroma Association (www.anausa.org)
American Brain Tumor Association (www.abta.org)
American Cancer Society (www.cancer.org)
BeHeadstrong Foundation (www.beheadstrong.org) Established in 2003 by a group of brain tumor survivors, their families and friends, the BeHeadstrong Foundation is a 501(c)3 non-profit organization dedicated to supporting the brain tumor community.
Brain Science Foundation (www.brainsciencefoundation.org)
Brain Surgery Information Center (www.brain-surgery.com)
Brain Tumour Foundation of Canada (www.braintumor.ca)
Brain Tumor Society (www.tbts.org)
Caregiver.com (www.caregiver911.com) This provides a comprehensive list of quality links on caregiving on the Internet. Also includes listings of other resources as well as an “Ask Dr. Caregiver” section.
Chemocare.com (www.chemocare.com) This website is designed to provide the latest information on chemotherapy to patients and their families, caregivers, and friends, and serves as a supplementary tool to the healthcare professional. Chemocare is a program of the Scott Hamilton CARES initiative.
The CyberKnife Society (www.cksociety.org)
David M. Bailey (www.davidmbailey.com) This affecting and electrifying singer/songwriter was diagnosed with a brain tumor and given only months to live in June of 1996. 10 years and 14 albums later, David continues to share his gift of music and passion to inspire others in their survivorship. Visit his website to hear his music, see him perform, or read more of his remarkable story.
DivineCaroline (www.divinecaroline.com) The DivineCaroline website has been established to provide voice and inspiration to women – a safe place where women can join together, express themselves, and find laughter, support, information and encouragement in an environment where life isn’t always fair or beautiful…but is always embraced.
Family Caregiver’s Alliance (415-434-3388) (www.caregiver.org) The alliance supports and assists caregivers of brain-impaired adults through education, research, services and advocacy. The organization provides a clearinghouse of information and resources related to medical, social, public policy and caregiving issues related to brain impairments. Their website includes an online support group for friends and family members caring for an adult with cognitive disabilities. An excellent resource for information on managing problem behaviors!
Gilda’s Club World Wide (www.cancersupportcommunity.org/) Gilda’s Club provides places where men, women, and children with cancer and their families and friends join with others to build social and emotional support as a supplement to medical care. Free of charge and non-profit, Gilda’s Clubs offer support and networking groups, lectures, workshops and social events in a nonresidential, home-like setting. Funding is solicited from private individuals, corporations, and foundations.
Inspiration Hospice (www.inspirationhospice.com) Inspiration Hospice provides the highest quality of hospice care to patients, their families and significant other care providers, developing professional healthcare partnerships, raising the care standard in the communities served and serving as the hospice employer of choice.
International Radiosurgery Support Association (www.irsa.org)
Lance Armstrong Foundation (www.livestrong.org) You can order a free Survivorship Notebook that includes survivor tools, stories, and topics to help keep you organized and inspired. Go to “Shop” and click on “Survivorship Notebook.”
Meningioma Mommas (www.meningiomamommas.org/) Meningioma Mommas is currently funding a neurosurgeon’s study to examine the link between hormones and meningioma tumors.
Musella Foundation (www.virtualtrials.com/musella.cfm) The Musella Foundation For Brain Tumor Research is a 501(c)3 non-profit organization dedicated to improving the quality of life and survival times for brain tumor patients. We will attempt to achieve that goal by using computer technology to streamline the flow of information, organize the brain tumor community and raise money for brain tumor research.
National Brain Tumor Society (1.800.934.CURE) (www.braintumor.org) NBTF is a nationwide non-profit organization serving people whose lives are affected by brain tumors. We are dedicated to promoting a cure for brain tumors, improving the quality of life and giving hope to the brain tumor community by funding meaningful research and providing patient resources, timely information and education.
National Family Caregivers Association (1-800-896-3650)(www.nfcacares.org) This group provides education and information services, support and validation for caregivers, public awareness and advocacy devoted to improving the quality of life of caregivers. Services for family caregivers include a quarterly newsletter, peer support network, educational materials, national resource referrals, and a bereavement program.
OncoLink, the website of the University of Pennsylvania Cancer Center(www.oncolink.upenn.edu) This site offers an unmoderated discussion list for parents, siblings, or friends of cancer patients; an e-mail discussion group about hospice-related issues; an extensive bibliography of issues related to caregiving; and an in-depth caregiver education course.
Pituitary Network Association (pituitary.org/)
QLu (www.MyQLu.com.org) With the help of some celebrities and cultural icons, this new service makes it easy to connect fans with their favorite heroes. Celebrity donations of clothes and other items go on auction through QLu to raise money for each star’s favorite charities, and another lucky buyer takes home a piece of her favorite superstar.
Southeastern Brain Tumor Foundation (www.sbtf.org)
SuperSibs! (www.supersibs.org) The mission of SuperSibs! is to honor, support and recognize the brothers and sisters of children with cancer. By reaching out to the siblings of those over 12,600 children diagnosed with cancer each year in the United States and Canada, the siblings will feel valued, validated, heard, supported, and delighted as recipients of SuperSibs! services and as participants in SuperSibs! activities.
Temodar – Your Questions Answered (www.temodar.com)
The Healing Exchange Brain (www.braintrust.org)
The National Brain Tumor Foundation (www.braintumor.org)
The Tug Mcgraw Foundation (www.tugmcgraw.org)
Children’s Brain Tumor Foundation (www.cbtf.org)
Pediatric Brain Tumor Foundation of the United States (www.curethekids.org/)
Ronald McDonald Houses (www.rmhc.com)
We Can (for parents of children with brain tumors) (www.wecan.cc)