Resources

Who to Talk to, Who Will Listen
Educational and emotional support is vital when responding to the unsettling news of a brain tumor diagnosis. Giving a smile to another patient, sharing information about treatment options, and providing general overall support is what “group” meetings are all about. Where to turn for treatment, how to break the news to family, and who to talk with about feelings and questions are among the many needs which we face and can discuss with the group.
While brain cancer may seem to be a lesser-known, lesser-studied, and lesser-funded disease, there exists a worldwide cooperative involving brain tumor patient support, advocacy initiatives, informational organizations, and clinicians. The SBTF strives to provide educational and emotional support to those on this journey by providing information about support services or links to various organizations or sites through which you might garner that educational and emotional support.

Support Groups
Throughout the year, the SBTF supports or hosts Brain Tumor Support Group meetings for patients, caregivers, friends, and families. These meetings provide an opportunity to share experiences, to learn about current therapies, and to receive information about various aspects of brain tumor diagnosis and treatment. Led by a Support Group Facilitator, the group setting allows individuals to share their experiences on the brain tumor journey, to ask questions, and to discuss progress. Topics will vary and a brochure, if available, will be posted in advance. Brain Tumor Support Group meetings provide an environment in which to discuss progress, treatments, and concerns with others who are going through the brain tumor experience. The information provided during the meetings is not intended to be a substitute for professional medical care or medical attention by a qualified practitioner.
The SBTF provides a listing of various brain tumor support group meetings in the Southeast; it does not provide recommendations or endorsements of specific physicians, medical institutions, products, procedures, or tests.

How To Help Me:
Developed by members of the Southeastern Brain Tumor Foundation Support Group as a resource for how friends can be of assistance to an individual or family coping with a diagnosis of a brain tumor.
Being of assistance to an individual is a wonderful gift. Being of assistance to a patient, who is unable to complete even the most routine of tasks, is priceless. Equally priceless is being of assistance to a patient caregiver. The brain tumor journey can be equally as daunting for both the patient and the caregiver and there are countless ways in which you can provide assistance to both.
First, start by making the statement “I want to help you” and complete the statement with something like “I have Thursday or Friday from 3:00 pm–6:00 pm available to come do laundry.” Follow that statement with the question “Which day works best for you?”
Believe it or not, the statement “I am available on X day” shows greater forethought and greater sincerity. It has far greater meaning than the statement “let me know if I can help.” If you truly want to be of help, rephrase your statement, and you’ll see what a difference a few words make. Below is a list of ways in which you can be of assistance to the patient and/or the caregiver:
- Transportation to medical appointments
- Sit with the patient while the caregiver takes a nap
- Massage / acupuncture
- Give me a manicure or pedicure
- Set up a schedule to make sure someone is always with me or checking on me
- Bring practical gifts, like fruit baskets or books instead of flowers
- Exercise with me
- Help me exercise my brain
- Picking up my mail and newspapers while I am getting treatment
- Pet sitting
- Babysitting
- Offer to strip the bed/change the sheets
- Offer to clean my house or offer to hire a maid
- Coordinate meals so all meals are not delivered at one time
- Schedule visits so that I am rested when you come to see me
- Bring me audiobooks
- Make me laugh
- Laugh with me
- Watch for my mood swings
- Rent videos for me
- Watch movies with me
- Accept my honesty
- Don’t try to “sugar coat” my feelings
- Don’t tell me that everything is going to be fine
- Be aware I may be immuno-suppressed, and don’t visit if you are sick
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.
www.anausa.org
600 Peachtree Pkwy, Suite 108
Cumming, GA 30041-6899
Phone: (770) 205-8211
Fax: (770) 205-0239
info@ANAUSA.org
www.abta.org
2720 River Rd.
Des Plaines, IL 60018
(800) 886-2282
info@abta.org
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)
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
www.cancerfac.org
CFAC is a coalition of organizations helping cancer patients manage their financial challenges.
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.
www.CancerQuest.org
Emory University
Winship Cancer Institute
1365B Clifton Rd. 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
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.
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.
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.
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.
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
a forum created by Meningioma Mommas
for anyone interested in brain tumor advocacy
Register at http://www.meningiomamommas.org/board/
www.cancer.emory.edu
Emory Brain Tumor Program
www.neurosurgery.emory.edu/BTP/index.htm
Emory University
Atlanta, GA
www.epilepsyidaho.org/seizure.htm
Seizure Recognition and First Aid
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.
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/.
Cancer Support for Adolescents and young adults.
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
www.aphasia.org
PO Box 87
Scarsdale, NY 10583
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
nciconnect@mail.nih.gov ph (240) 760-6530
Connects patient, providers, researchers, and community organizations in partnership pertaining to care and treatment of rare brain and spine tumors.
www.cancer.duke.edu/btc
Duke Comprehensive Cancer Center
Durham, NC
www.theibta.org
PO Box 244, Tadworth
Surrey, UK KT20 5WQ
chair@theibta.org or kathy@theibta.org
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
Visit the Social Security website to learn more about filing for Social Security Disability: http://www.socialsecurity.gov/disability/index.htm
Various United States 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/
Patients Like Me: http://www.patientslikeme.com/clinical_trials
COVID-19 Resources:
GA Department of Public Health (Status, Testing Locations, Vaccination Information): https://dph.georgia.gov
GA Department of Education: https://www.georgiainsights.com/coronavirus.html
Centers for Disease Control & Prevention (CDC): https://www.cdc.gov/coronavirus/2019-ncov/index.html
Benefits.gov (Guide to government benefits as a result of COVID-19): https://www.benefits.gov/help/faq/Coronavirus-resources
USDA Food & Nutrition Resources (SNAP, WIC and school meals): https://www.fns.usda.gov/disaster/pandemic/covid-19/resources-individuals-families
Small Business Administration: https://www.sba.gov/page/coronavirus-covid-19-small-business-guidance-loan-resources
IRS (Tax Relief & Economic Impact Payments): https://www.irs.gov/coronavirus-tax-relief-and-economic-impact-payments
Department of Labor (Workplace Resources): https://www.dol.gov/coronavirus
White House Coronavirus Site: https://www.coronavirus.gov