INFORMATIONAL LINKS

The links below are provided for the purpose of listing other sources of educational and informational data pertaining to brain tumors and brain cancers. The inclusion herein of a link to another site does not imply endorsement of an organization by the Southeastern Brain Tumor Foundation. Patients and caregivers should use your own judgement interpreting this information and should consult their health care professionals for medical guidance. Then, if feasible, we’d like to list the various links.

 

Acoustic Neuroma Association 
www.anausa.org
600 Peachtree Pkwy, Suite 108
Cumming, GA 30041-6899
Phone: (770) 205-8211
Fax: (770) 205-0239
info@ANAUSA.org

American Brain Tumor Association 
www.abta.org
2720 River Road
Des Plaines, IL 60018
800-886-2282
info@abta.org

The Brain Tumor Network
www.braintumornetwork.org
BTN’s mission is to aid brain tumor patients and care providers in the USA who seek personalized information about treatment options beyond, or in addition to, the standard of care. BTN can also assist in finding a treatment center or second opinion.
844.286.6110 (toll free)

Brain Tumor Foundation for Children, Inc.

www.braintumorkids.org
a.k.a. Georgia Chapter of the Pediatric Brain Tumor Foundation
6065 Roswell Rd., NE
Suite 505
Atlanta, GA 30328
404-252-4107

Brain Tumor Resource and Information Network (B.R.A.I.N.) 
www.brainsite.org
PO Box 4316
Glen Allen, VA 23058-4316
804-749-3649 or 800-900-6195 (code 48)

Brain Tumor Society
www.tbts.org
124 Watertown Street Suite 3H
Watertown MA 02472-2500
800-770-TBTS (8287)
info@tbts.org

Cancer Financial Assistance Coaltion
www.cancerfac.org
CFAC is a coalition of organizations helping cancer patients manage their financial challenges.

Cancer Hope Network
www.cancerhopenetwork.org
The Cancer Hope network provides individual support to cancer patients and their families by matching them with trained volunteers who have undergone and recovered from a similar cancer experience.

CancerQuest
www.CancerQuest.org
Emory University
Winship Cancer Institute
1365B Clifton Road NE
Suite B4100
Atlanta, GA 30322
This is a website that provides easy-to-understand answers to difficult questions about the biology of cancer — including brain tumor.
cancerquest@emory.edu

Cancer Research Institute
www.cancerresearch.org
Cancer Research Institute
National Headquarters
One Exchange Plaza
55 Broadway, Suite 1802
New York, NY 10006
800-99-CANCER (800-992-2623)
212-688-7515
non-profit organization working to conquer cancer through immunology. Visit Cancer Immuno-therpay tab for glossary of terms, clinical trial finder, and patient and other resource information.

Cancervive.org
 www.cancervive.org
Helps cancer survivors overcome the challenges of “life after cancer”.  In addition to support groups, they provide educational materials, insurance information and assistance, and advocacy.

Caring Connections
www.caringinfo.org
Caring Connections provides people with information and support when they are planning ahead, caring for a loved one, living with an illness, or grieving a loss.  Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life.  Since 2004 Caring Connections has provided more than 1.3 million advance directives to individuals free of charge.

CaringBridge – a 501(c)(3) non-profit web service.
www.caringbridge.org/
Free personalized websites that support and connect loved ones during critical illness, treatment, and recovery. The site allows visitors to post encouraging messages and support on individualized password-protected websites.

Charles Warren Brain Tumor Awareness Foundation
www.charleswarrenfoundation.org
P.O Box 298
Douglasville, Ga. 30133
770-942-0639
awareness@charleswarrenfoundation.org

Children’s Brain Tumor Foundation
www.cbtf.org
274 Madison Avenue, Suite 1301
New York, NY 10016
212-448-9494
Fax: 212-448-1022
Toll-free Patient Support Line: 866-228-HOPE
info@cbtf.org

Cranium Crusaders
a forum created by Meningioma Mommas 
for anyone interested in brain tumor advocacy
Register at http://www.meningiomamommas.org/board/

Emory Winship Cancer Institute
www.cancer.emory.edu
Emory Brain Tumor Program
www.neurosurgery.emory.edu/BTP/index.htm
Emory University
Atlanta, GA

Epilepsy Foundation – Idaho
www.epilepsyidaho.org/seizure.htm
Seizure Recognition and First Aid

FODAC –  Friends of Disabled Adults and Children (Georgia)
www.fodac.org
FODAC provides over $8 million each year in equipment and services to the community at little or no cost to recipients.  FODAC is a 501(c)3 and does not have direct funding from Medicare/Medicaid for the services offered.  Most equipment is issued for a suggested donation but some services have mandatory fees.

International Brain Tumour Alliance – IBTA
www.theibta.org
A not-for-profit organisation registered in England and Wales!  The IBTA advocates for equitable patient access to brain tumour therapies, encourages the establishment of brain tumour support groups in countries where they don’t yet exist, and raises awareness of the challenges of this devastating disease. The IBTA also provides links to various “trial” sites both here and abroad –  http://theibta.org/clinical-trials-registry/.

MedulloBlastoma PNET Online Support Group
This is an online support group set up for survivors, parents, professionals, and anyone who is interested in medullo blastoma or pnet brain tumors.To subscribe, write to Medulloblastoma-subscribe@onelist.com

National Aphasia Association
www.aphasia.org
P.O.Box 87
Scarsdale, NY 10583

National Brain Tumor Foundation 
www.braintumor.org
22 Battery Street, Suite 612
San Francisco, CA 94111-5520
Patient Line: 1-800-934-CURE
Business Line: 415-834-9970
Fax: 415-834-9980
nbtf@braintumor.org

North American Brain Tumor Coalition
www.nabraintumor.org 
info@nabraintumor.org

One More Day for Angels 
770-597-6747
www.onemoredayforangels.com
sdb118@bellsouth.net

Partnership for Prescription Alliance 
www.pparx.org

Planet Cancer.org
www.planetcancer.org
Website for young adults with cancer.  A place to share insights, explore fears, or laugh with others.

The Brain Tumor Center at Duke
www.cancer.duke.edu/btc
Duke Comprehensive Cancer Center
Durham, NC

The International Brain Tumour Alliance
www.theibta.org
PO Box 244, Tadworth, Surrey KT20 5WQ
United Kingdom
chair@theibta.org or kathy@theibta.org

The Johns Hopkins Brain Tumor Radiosurgery Site 
www.med.jhu.edu/radiosurgery
Offers the Meningioma Mailing List
Department of Neurosurgery
The Johns Hopkins Hospital
600 North Wolfe Street
Baltimore, MD 21287-8811
410-614-2886
Fax:410-614-2982 or 410-614-7011

The Musella Foundation for Brain Tumor Research and Information
www.virtualtrials.com
1100 Peninsula Blvd.
Hewlett, NY 11557
515-295-4740
musella@virtualtrials.com

The University of Texas, MD Anderson Cancer Center, Familial
www.epigenetic.org/~cspencer/brain.html
Brain Tumor Registry
Department of Epidemiology – Box 189
515 Holcombe Blvd.
Houston, Texas 77030-4095
Contact Mary Wright, R.N. to register or request information.
Phone:713-745-4113 or 800-248-4856
Fax:713-792-8261 
mawright@mdanderson.org

Following are links for the Social Security Disability issue which may be applicable to persons diagnosed with brain tumor:
Disability Home Page:
http://www.socialsecurity.gov/disability/index.htm

Various US clinical trial sites:  

Virtual Trials:  http://www.virtualtrials.com/clinical_trials_finder.cfm

Clinical Trials.gov:  https://www.clinicaltrials.gov/

Center Watch: http://www.centerwatch.com/

Clinical Trials Feeds.org:   http://clinicaltrialsfeeds.org/

Patients Like Me: http://www.patientslikeme.com/clinical_trials

 

There is an online application form but if the diagnosis is expected to end in death, a phone call must be made to set up an office or phone interview. Most brain tumor centers will have have social workers who are able to pull together the pertinent information needed for the interview and/or application. (Note that once someone receives Social Security Disability benefits, he/she may be eligible to apply for a disability exemption on their property taxes. Check with your county tax office.)