Resources

Essential Resources on Brain Tumor Diagnosis and Treatment

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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.

SFHInc May 2014

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.

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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
American Brain Tumor Association

www.abta.org
2720 River Rd.
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

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 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

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.

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/.

Livestrong Young Adults

Cancer Support for Adolescents and young adults.

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
PO Box 87
Scarsdale, NY 10583

National Brain Tumor Foundation
NCI-CONNECT

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.

Partnership for Prescription Alliance
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, UK KT20 5WQ
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

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:

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