Resources

Opinions or claims made by these organizations/individuals do not necessarily reflect or represent those of The Guardian Brain Foundation.


Brain Tumors
Acoustic Neuroma Association
http://www.anausa.org
Provides information and support to patients who have been diagnosed with or experienced an acoustic neuroma or other benign problem affecting the cranial nerves
American Brain Tumor Association
http://www.abta.org
Complete source for information about brain tumors, treatment options, clinical trials and living with a brain tumor.  Also provides a broad variety of social work resources and services for you.
David M. Bailey
http://www.davidmbailey.com
Singer, songwriter & survivor who gives inspiration and information about his ordeal with GBM IV.
The Brain Tumor Center at Duke
http://cancer.duke.edu/btc
Dedicated entirely to the treatment and cure of brain and/or spinal cord tumors in children and adults.
The Brain Tumor Foundation
http://www.braintumorfoundation.org
Using internet technology and connections to the medical community, the BTF is a patient advocate to promote the best therapy available and support for the family.
The Brain Tumour Foundation of Canada
http://www.braintumour.ca
Provides an interactive and supportive opportunity for brain tumour patients and their loved ones.
The Brain Tumor Society
http://www.tbts.org
It strives to improve the quality of life of brain tumor patients and their families.  It disseminates educational information and provides access to psycho-social support.  It raises funds to advance carefully selected scientific research projects, improve clinical care and find a cure.
Brain Tumor Trials and Treatments
http://www.virtualtrials.com
Designed for educational purposes to learn about brain tumors.  Information is provided by independent contributed articles.
Children’s Brain Tumor Foundation
http://www.cbtf.org
Provides an array of information and resources to assist you in accessing expert care to ensure quality of life for the child in your life with a brain or spinal cord tumor.
Cleveland Clinic Brain Tumor Institute
http://www.clevelandclinic.org/braintumor
Comprehensive treatment for adults and children with brain tumors, both benign and malignant.  Patients have access to the latest radiosurgery technology, as well as intra-arterial chemotherapy (with or without blood-brain barrier disruption), newer systemic chemotherapies and a variety of clinical trials.  Online second opinions available through e-Cleveland Clinic.
The Colorado Neurological Institute
http://www.thecni.org
Most comprehensive neuroscience center in the Rocky Mountain region. Integrated, multi-disciplinary teams of neuroscientists provide comprehensive care for adults and children suffering from a wide range of neurological diseases. Specialized programs and services provide patient care, education, research and outreach activities.
Columbia University Pilomyxoid Astrocytoma Resource
http://www.pilomyxoid.com
Increasing awareness of this rare disease to help both clinicians and families better understand, diagnose, and treat pilomyxoid astrocytoma.
Gilda’s Club
http://www.gildasclub.org
Gilda’s Club is a special place where the focus is on living with cancer. And where men, women and children with any kind of cancer and their family members and friends can plan and build life-changing emotional and social support.
Mayo Clinic
http://www.mayo.edu
Charitable, not-for-profit organization based in Rochester, Minn.  Its mission is to provide the best care to every patient every day through integrated clinical practice, education and research.
Meningioma Mommas
http://www.meningiomamommas.org
Online support group for, but not limited to, women with meningioma brain tumors.  Having a brain tumor hasn’t stopped them from continuing their roles in life.
National Brain Tumor Foundation
http://www.braintumor.org
Helps you cope by offering information about brain tumors and treatment, malignant and benign brain tumors, brain tumor medical centers, the latest brain tumor clinical trials as well as connecting you to a network of brain tumor survivors.
Brain Injuries
Brain Injury Association National Helpline
http://www.biausa.org
1-800-444-6443
Wants to improve the quality of life for their family members who had sustained brain injuries.
The Brain Injury information Network
http://www.tbinet.org
Devoted to helping people find information on ABI/TBI and we provided a little of our own, as well as about 30 support mailing lists covering Brain Injury, Stroke, Coma, Downs Syndrome, etc.
Center for NeuroSkills
http://www.neuroskills.com
Traumatic Brain Injury Resource Guide
Purpose is to reduce disabilities, maximize independence, and achieve the maximum possible quality of life for clients who have suffered brain injury within the client’s existing financial constraints.
Dana Alliance for Brain Injury Initiatives
http://www.dana.org
Provides information about the programs, activities, and publications, as well the latest news about the brain.  A non-profit organization of more than 200 pre-eminent neuroscientists, including 10 Nobel laureates, dedicated to advancing education about the brain.
*Listen to their online radio series,
“Gray Matters,” at http://www.dana.org/books/radiotv/
The HY Feinstein Clubhouse
http://lihia.org/CLUB.HTM
Non-profit organization whose primary mission is to provide a place for people with head injuries to participate in meaningful work; to have the opportunity to meet and build friendships; and ulimately seek employment within the community.
Head Way – The Brain Injury Association
http://www.headway.org.uk
Promotes understanding of all aspects of brain injury; and provides information, support and services to people with a brain injury, their family and careers.
The Long Island Head Injury Association
http://www.lihia.org
Not-for-profit organization committed to ensuring that survivors of head injury maximize their potential for recovery and are able to lead productive and personally meaningful lives while becoming as independent as possible.
National Institute of Neurological Disorders and Stroke
http://www.ninds.nih.gov
Strives to be the first place the public turns to for authoritative neuroscience research information and lead the neuroscience community in shaping the future of research and its relationship to brain diseases.
Additional Resources
CJD Voice
http://www.cjdvoice.org
A grass roots organization of individuals formed to support families during and after a CJD crisis.  They discuss various issues surrounding CJD and other related illnesses.
Creutzfeldt-Jakob Disease Foundation
http://www.cjdfoundation.org/
The Foundation provides emotional support to individuals and families dealing with CJD and other prion diseases as well as practical information to caregivers.
Families USA
http://www.familiesusa.org
National nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans.
Head Injury Hotline
http://www.headinjury.com
Offers consultations, research assistance, case management services, legal services, and in-service training.
Healthfinder®
http://www.healthfinder.gov
Recognized as a key resource for finding the best government and nonprofit health and human services information on the Internet.
Human Rights Education Association
http://www.hrea.org/erc
An on-line repository of human rights education and training materials, on-line forums, databases and links to other organisations and resources.
Locks of Love
http://www.locksoflove.org/
A non-profit organization that provides hairpieces to financially disadvantaged children 18 years and younger suffering from long-term medical hair loss.
Neurotrauma Law Nexus
http://www.neurolaw.com
Your information resource for understanding the legal system’s involvement in brain and spinal cord injury cases.
TBI Help Desk for Caregivers
http://www.tbihelp.org
Provides updates so you can stay informed on the latest news on treatment, prevention, coping and more.
Worksupport.com
http://www.worksupport.com
Identify factors that enhance or inhibit businesses from tapping into a pool of potential employees.  Pushes be a gateway to information, resources, and services regarding the employment of people with disabilities.