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The CNI Center for Brain & Spinal Tumors
Education & Information
Helpful Information
 Inspiring Patient Stories
Life Inside Out: A Practical and Inspirational Guide to Dealing with Cancer and Other Life-threatening Illnesses, by Lyn Densem-Chambers (now available on Amazon.com!)
The author is a patient in the CNI Center for Brain & Spinal Tumors. Based on her personal experience with a very deadly form of brain cancer, Life Inside Out takes a positive approach to dealing with a life-threatening illness like cancer. The book is both practical and inspirational, covering topics such as coping with diagnosis, selecting a treatment plan, managing insurance, ideas for supporting the patient, and ways to stay healthy both during and after treatment ends. A valuable and highly recommended resource for patients and those who care for them. You can purchase your own copy ($12.95) of Life Inside Out by clicking here.
National Brain Tumor Organizations
ABTA Dictionary for Brain Tumor Patients
This dictionary of neurological terms was compiled by the American Brain Tumor Association. www.abta.org/information/dictionary.htm
American Brain Tumor Association
This Des Plaines, Illinois, organization provides information and funds brain tumor research. ABTA's website now includes an online version of the booklet, "A Primer of Brain Tumors, Seventh Edition". www.abta.org
Interested in Online Surveys?
If you want the opportunity to share your experience or your perspective on your healthcare, a new feature at the ABTA web site may be just right for you! Internet Resources/Online Surveys provides a continually updated list of announcements for online and telephone surveys in need of participants. A summary of the activity is posted along with information about the people eligible to participate. Many of these projects seek patients, family members, long term survivors, and/or those who have not experienced a major disease who are willing to serve as controls. Scroll through the list at www.abta.org/internetresources4.htm; if you do not find anything appropriate for you at your first visit, go back in another month or two. ABTA is constantly adding new announcements.
Acoustic Neuroma Association
The Acoustic Neuroma Association publishes a quarterly newsletter, distributes patient information booklets, presents a biennial national symposium, provides access to a network of local support groups, compiles a Registry of statistical data on acoustic neuroma treatment. www.anausa.org
Brain Tumor Foundation of Canada Pituitary Tumor Network Association
Information for the medical community, the public, pituitary patients and their families on matters regarding early detection, symptoms, treatments and resources available to patients. www.btfc.org
Brain Trust
The Brain Trust Healing Exchange runs a number of online support groups, foremost among which is the BRAINTMR mailing list. BRAINTMR is a list devoted to discussion of all types of brain tumors, and is the most popular list provided by the Brain Trust. For more information about the other mailing lists and online support groups, take a look at Other Mailing Lists and Support Groups section. www.braintrust.org
Cancer Hope Network
A not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. www.cancerhopenetwork.org
Central Brain Tumor Registry of the United States (CBTRUS)
A not-for-profit corporation that collects data on primary benign and malignant brain tumors into a central database. www.cbtrus.org
Family Caregiver Alliance
Family Caregiver Alliance supports and assists caregivers of brain-impaired adults through education, research, services and advocacy. The FCA's Fact Sheet -- Brain Tumor includes tumor symptoms, diagnosis and treatment information. www.caregiver.org
International Psycho-Oncology Society (IPOS)
Founded in 1984, was created to foster international multidisciplinary communication about clinical, educational and research issues that relate to the subspecialty of psycho-oncology and two primary psychosocial dimensions of cancer: Response of patients, families and staff to cancer and its treatment at all stages; and psychological, social and behavioral factors that influence tumor progression and survival. www.ipos-society.org
Musella Foundation for Brain Tumor Research and Information
Provides brain tumor treatment information, survivor stories and video library on their website: Clinical Trials and Noteworthy Treatments for Brain Tumors. www.virtualtrials.com
National Brain Tumor Society
Contains basic information about brain tumors, FAQs, resources for health professionals, events and conferences, and family support advice. The website features an extensive list of links to research and support organizations. www.braintumor.org
National Cancer Institute
The National Cancer Institute's website provides accurate, up-to-date information on many types of cancer, information on clinical trials, resources for people dealing with cancer, and information for researchers and health professionals. The brain tumor sub-site gives an overview of brain tumors, including types, stages, symptoms, diagnosis and treatment. www.Cancer.gov
Reel Recovery
Reel Recovery was founded in 2003 by a group of avid fly-fishers, inspired by their fishing buddy's ongoing battle with brain cancer. Witnessing first-hand the beneficial impact fly-fishing provided their friend, they created Reel Recovery to provide the same opportunity for other men battling the disease. Combining expert fly-fishing instruction with directed "courageous conversations", the organization provides men with all forms of cancer a unique opportunity to share their stories, learn a new skill, form lasting friendships and gain renewed hope as they confront the challenges of cancer. www.reelrecovery.org
Well Spouse Foundation
Support for husbands, wives and partners of the chronically ill and/or disabled. We provide our bi-monthly newsletter, "Mainstay," mutual aid support groups in many areas, letter writing support groups and an annual conference and other regional and weekend meetings around the country. www.wellspouse.org
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