| The Enoh Nkongho Brain Foundation
| Tali's Fund
| German Brain Tumour Association
0049 341.590 93 96
| AITC - Associazione Italiana Tumori Cerebrali ONLUS
East Sussex UK
| Brain Tumour (BT) Buddies
Cheshire United Kingdom
| Astro Fund
0161 221 1320
CO United States
| Glenn Garcelon Foundation
| Glenn Alan Miller Memorial Fund
| Students Supporting Brain Tumor Research
| Oligo Fund of Musella Foundation
| Coalition for Children's Brain Tumor Research
| Whole Child LA and Whole Child Foundation
| We Can, Pediatric Brain Tumor Network
| The Tug McGraw Foundation
| San Diego Brain Tumor Foundation
| UCLA Department of Neurosurgery
|US Air Force Academy,
| Rachael's Ribbons of Hope Foundation
| University of Connecticut
District of Columbia
| Accelerate Brain Cancer Cure
| Miles For Hope
| Florida Brain Tumor Association
|Ponte Vedra Beach,
| Nicki Leach Foundation
| Just One More Day for Love, Hope & a Cure
| Bend Your Knees, Inc.
| The Charles Warren Brain Tumor Awareness Foundation, Inc.
| The Michael Overall Benefit Fund
| Imerman Angels
| Michael Matters Foundation
| LAAF - Lori Arquilla Andersen Foundation
904-334-0124 / 847-561-1199
| Benny's World
|Lake in the Hills,
| Ryan Lamantia Foundation
| PA/PMA Research Fund at Johns Hopkins
| Gunner's Magic Train Pediatric Cancer Foundation
| Epidermoid Brain Tumor Society
| National Brain Tumor Society
617 924 9997
| Keep Punching
| Childhood Brain Tumor Foundation
| Michigan State University
| Unlocking Brain Tumors, Inc
| Another Day Another Memory (A.D.A.M.)
| Head for the Cure Foundation
| Walk For Kate
| Brains Together For a Cure
| UNC Chapel Hill
| Brain Tumor Fund for the Carolinas
| Preston Robert Tisch Brain Tumor Center
| New Jersey Brain Tumor Support Group
| Gray Matters Brain Cancer Foundation
| The Kortney Rose Foundation
| Thea's Star of Hope
| Peter A Bednarski Fund for Brain Tumor Research Inc
| Matthew's Miles
| Roswell Park Cancer Institute
| A Kids' Brain Tumor Cure
| Musella Foundation For Brain Tumor Research & Information, Inc
| Children's Brain Tumor Foundation
| Cristian Rivera Foundation
| Kamen Brain Tumor Foundation
| Voices Against Brain Cancer
516 633 0800
| Michael A. DiCarlo Brain Tumor Foundation
| Smiles For Sophie Forever
| Tommy Detesco Fund for Adolescents and Young Adults
| Cure Starts Now
| Ohio State University Medical Center
| Kevin Mullin Memorial Fund for Brain Tumor Research
| Rockin' on the Run
| Michael G. Belz Foundation
| Lifestream for Kids
| Oklahoma Brain Tumor Foundation
| Wylie's Day Foundation
| Denise's People
| Lauren's First and Goal Foundation
| Kyle Daniel Kerpan Foundation
| Samuel J Foundation
| University of Pennsylvania Department of Neurosurgery
| Allegheny Brain Tumor Center
| Aimee's Army
| Crozer-Chester Foundation
| Rhode Island Brain & Spine Tumor Foundation
| The Brain Tumor Awareness Organization
| Brain Tumor Group Of Tennessee
| Greg's Mission
| The Nick Gonzales Foundation for Brain Tumor Research
| Team Underwood Foundation
| Dr. Marnie Rose Foundation
| The Brain Tumor Trials Collaborative (BTTC)
| Children's Brain Tumor Research Foundation
| The Brad Kaminsky Foundation for Brain Tumor Research
| Brown Bag For A Cure
| Lou Beeler Foundation
| Brain Tumor Resource And Information Network
1-800-900-6195 code 48
| The Brian Bedell 2-Young Foundation
| Gayle SHeldon Memorial Foundation for Brain Cancer, Inc.
| The Chris Elliott Fund
253 266 0009
| Raleigh General Hospital
| Brain Injury Association of Wyoming
DIPG Resource Network.
DIPG Registry and information on Diffuse Intrinsic Pontine Gliomas
The Cure Starts Now
MICHAEL MOSIER DEFEAT DIPG FOUNDATION
Children's Oncology Group
Other Brain Tumor Organizations
International Brain Tumour Alliance (IBTA)
- The International Brain Tumour Alliance is a coalition of the support, advocacy and information groups for brain tumour patients and caregivers in different countries and also includes researchers, scientists, clinicians and allied healthcare professionals who work in the field of brain tumours. Website: www.theibta.org Email: firstname.lastname@example.org or email@example.com Telephone: (44) (0) 1737 813872 (UK) or (61) (2) 6258 3912 (Australia)
Collaborative Ependymoma Research Network: Ependymoma research and information. See video
The Tug McGraw Foundation The mission of the Foundation is to support research that will improve the quality of life for brain
cancer patients and their families.
The Tug McGraw Foundation was established to raise funds for pioneering brain cancer
research, increase public awareness of the disease, and support college students who
exemplify leadership and Tug's inspiring "Ya Gotta Believe" spirit.
Tug McGraw Foundation
1303 Jefferson Street, Suite 100B, Napa, CA 94559
Phone: (707) 255-1884
Fax: (707) 255-1926
HOPE With Support was established to give extra support to those whose lives
are affected by brain tumors, including survivors, caregivers and their
families and friends.
This organization is dedicated to providing brain tumor awareness through
outreach, encouragement, education, and hope for brain tumor survivors,
families and caregivers through support groups, seminars, online support,
and raising funds for research to find the cure for brain tumors.
- To "Help others by providing Encouragement" to persons diagnosed with
- To help brain tumor survivors, their families and their caregivers by
providing information, education and support.
- To promote Quality of Life for the victims of the disease.
- To promote public awareness of this disease through speaking engagements,
and by sharing with others.
- To advocate for brain tumor awareness among the public.
National Brain Tumor Society 800-934-2873
The National Brain Tumor Society is a nationwide non-profit organization serving people whose lives are affected by brain tumors. We are dedicated to promoting a cure for brain tumors, improving the quality of life and giving hope to the brain tumor community by funding meaningful research and providing patient resources, timely information and education.
NBTF has awarded over $5 million in brain tumor research since our founding in 1981 and is the leading provider of services to brain tumor patients and their families. Services include a toll-free Patient Information Line (800.934.2873), comprehensive website (www.braintumor.org), Essential Guide to Brain Tumors and other printed publications, caregiver workshops, medical information nurse, patient and caregiver support network , support groups across the country, Search newsletter, monthly e-newsletter, teleconferences, conferences, financial assistance, resources in Spanish, Angel Adventure fundraising walks and community days, Racing Ahead for NBTF program and more. All of our programs are free.
Brain Tumor Society, founded in 1989, exists to find a cure for brain tumors. BTS is committed to research, education and support. BTS strives to improve the quality of life for all those affected by a brain tumor diagnosis. BTS provides psychosocial support through telephone counseling, assistance in finding and accessing local support groups or services, informational materials, and educational events for patients, survivors and their families.
BTS has funded over $9 million since the inception of its Research Grant Program, including $1.8 million in 2005 alone. The Research Grant Program funds vital science research projects undertaken by pioneers in science and research, who bring us closer to a cure for brain tumors. BTS believes that there is hope, and there will be a cure.
Sarah Gupta, LICSW
Director of Support Services
Brain Tumor Society
124 Watertown Street, Suite 3H
Watertown, MA 02472
Toll Free: 800.770.8287 ext 25
American Brain Tumor Association Phone: 800-886-2282
Bryanâ€™s Dream Foundation 908-693-0649
Bryan's Dream Foundation is a non-profit
501(c)(3) organization established in memory of
Bryan Timothy Opremcak. The mission is to make
life a little brighter for children with brain
tumors, and other pediatric cancers, and their
families by providing financial assistance,
information & support, to promote pediatric
brain tumor awareness and to provide funding to pediatric brain tumor research.
The Brain Tumour Foundation of Canada Phone: 519-642-7755 or 1-800-265-5106
The Childhood Brain Tumor Foundation Phone: 877-217-4166
The Children's Brain Tumor Foundation (CBTF) Phone: 866-228-HOPE (4673)
The Central Brain Tumor Registry of the United States (CBTRUS) Phone: 773-579-0021
The Children`s Tumor Foundation: Ending Neurofibromatosis Through Research
formerly known as the National Neurofibromatosis Foundation
95 Pine Street 16th Floor
New York, NY 10005
Phone: 800-323-7938 or 212-344-6633
Brain Tumour U.K. , founded in 1997, is a national charity, and our aims are:
- to increase awareness and knowledge of brain tumours
- to improve access to information and support for brain tumour patients
- to advocate for enhanced treatment and care
- to raise significant funds for research projects
The National Association for Proton
Pediatric Cancer Foundation of the Lehigh Valley
The Gerry& Nancy Pencer Brain Trust
The Preuss Foundation
The NJ Brain Tumor Support Group
Southeastern Brain Tumor Foundation
Jeffrey Thomas Hayden Foundation The Jeffrey Thomas Hayden Foundation was created to increase
Awareness about Pediatric Brain Tumors and provide Education and Support
to affected families. To raise money to fund worthy causes; such as
Academic Scholarships, Research, and assist other support organizations
with their efforts, with a focus on finding a balance between the best
available treatments with the best quality of life.
Lauren's First and Goal Foundation created to raise funds to support pediatric brain tumor research, support local pediatric cancer services, provide financial assistance to families living with a pediatric cancer diagnosis and to raise public awareness regarding pediatric brain tumors.
The Charles Warren Brain Tumor Awareness Foundation, Inc. is a 501(c)3 with the purpose of promoting brain tumor awareness and raising funds for research and development of a cure.
Sydney Neuro Oncology Group is a charitable organisation in Australia NSW who deal with brain tumour patients both in research and support.
Samantha Dickson Brain Tumour Trust (SDBTT)
The largest funder of laboratory based brain tumour research in the UK. Offers a vital support link for patients diagnosed with a brain tumour and their families or carers. Tel: (UK) 0845 130 9733 Email: firstname.lastname@example.org
Astro Brain Tumour Fund www.astrofund.org.uk
Low grade glioma support can be found on Facebook and is a closed group, open to both patients and carers. It offers a supportive environment, information, inspiration and hope to all those living with an low grade astrocytoma, oligodendroglioma, ependymoma and oligoastrocytoma. Search Facebook for 'Astro Brain Tumour Fund Low Grade Glioma Support' and request to join. Check your message box as you will be contacted, privately, by a trustee. Alternatively, you can email email@example.com
Wish Granting Organizations
Children - Make -A -Wish Foundation
Adults - Fairy god mother.org
COMPASSION PARTNERS- Provides FREE theme park tickets in Florida, for you
and your entire family if you have a "terminal" or "life threatening
illness" verified by your doctor. The number to call is 407-396-1114, the
lady you need to talk to is Donna.
Other Organizations that offer help
WWW.NEEDYMEDS.ORG The most complete database of patient assistance programs also offers the NeedyMeds Drug Discount Card, which can be printed at no charge and requires no registration.
CancerCare provides free professional support ervices -- including counseling, education, financial assistance, and practical
help. These services are all provided for free by trained oncology social workers. If you need any information about CancerCare's services and/or would like to speak with an oncology social worker about your situation, please contact us at 1-800-813-HOPE (4673)."
CANCER FUND OF AMERICA- Provides all FREE basic living needs such as
shampoo, candy, toys, clothes, crutches, advil, and many, many more items.
www.cfoa.org, can also be reached at 1-800-578-5284 or mail to
BELLSOUTH- also offers approximately $12.00 off your phone bill through
the "Lifeline" program if you are on medicaid.
THE TIM AND TOM GULLIKSON SCHOLARSHIP PROGRAM- This foundation will give
scholarships to children whose parents who have had or has brain tumors.
Just type in Tim and Tom Gullikson Foundation.
THE GEORGE BARTOL SCHOLARSHIP FOUNDATION- Gives scholarships to persons
whose parents have had or has aa brain tumor or tumors. Just type in The
George Bartol Scholarship Fund.
WWW.CROSSINGTHEFINISHLINE.ORG-This org. will give a FREE 1 week all
expense paid vacation tto those with a diagnosis of cancer, and their
caregiver. Needs verification by your doctor. Children allowed if feasible.
Open to those ONLY IN THE STATES OF PA, NJ, and DE. Must be between the ages
of 18-50 years of age.
WWW.ANGELFLIGHT.ORG- Angel Flight West provides FREE transportation to
medical treatment for those who cannot afford public transportation, or who
cannot tolerate it for health reasons. Angel Flight also flies missions in
response to other compelling needs. Angel Flight West accepts requests from
individuals or health care professionals such as social workers and
physicians. They have regional flight programs accross the country, you can
call one of these organizations that can direct you to the appropriate
branch. You can also call Angel Flight West toll free at: 1-888-4-AN-ANGEL.
MIRACLE FLIGHTS FOR KIDS (NOTE: not just for kids!)
http://www.miracleflights.org/ Flies children (also some adults) who
are struggling with serious cancers and debilitating diseases to
specialized medical treatment centers across the United States. Any
child needing medical treatment or second opinion not available in their
area is eligible to apply for a miracle mission. These are airline
flights, better for some who would find it difficult to travel on the
smaller private planes offered by Angel Flights.
AMERICAN CANCER SOCIETY http://www.cancer.org/ A nationwide,
community-based voluntary health organization with more than 3,400 local
offices. Provide a wide range of emotional and practical support for
patients, families, caregivers, and communities. Trained cancer
information specialists are available 24 hours a day, seven days a week
to answer questions about cancer and link callers with resources. Call
800-ACS-2345 (1-866-228-4327 for TTY). Callers who speak languages
other than English and Spanish can also be assisted. Note they can help
you get discounted hotel rates and ground transportation when traveling
for "second opinion" consultations or treatment.
THE PATIENT ADVOCATE FOUNDATION http://www.copays.org/ Co-Pay
Relief program for people with type 3 and 4, i.e. malignant, brain
tumors. They will cover your prescription co-pays if you qualify for
their services! Toll Free 1-866-512-3861, email:
http://www.patientaccessnetwork.org/ Patient Access Network - offers help to people who can't afford treatment!
Mercy Medical Airlift: 888-675-1405
ASC Air Miles (this is all mileage that has been donated) 1-800-227-2345
-Will help patient and ONE care giver with air ticket (although the caregiver's ticket is NOT guaranteed)
-Prefer 3 weeks notice
-May be able to help with co-payments for treatment, please request
-No restrictions as to how many times patients need to travel can go, only limitations on caregiver
-$10 security fee, baggage fee is applicable, no processing fee, BUT processing fee could vary between $20-$65 if request is made within 21 days- so total cost can vary between $50-$100
-Air miles program can be reached from 8 am to 4pm central time
Cancer Organizations (not brain tumor specific)
Stand Up To Cancer
Stand Up to Cancer is launching a new movement to attack cancer once and for all by pushing promising scientific breakthroughs to the finish.
Resources to help explain brain tumors to kids!
Young Adult Cancer Survivors Resources
This list maintained by Jessica Taylor - of the young adult cancer group in St Louis.
Ulman Cancer Fund Remote Patient Navigation Services, can help locate local and national resources to help with a variety of needs specific to being a young adult survivor
I'm Too Young For this Cancer Foundation has helpful resources, online message board support, as well as a weekly radio show with topics pertaining specifically to young adults
National Coalition for Cancer Survivorship has information as well as recordings of patients telling their stories about managing various issues
- National Cancer Institute has a large amount of information for adolescents and young adults
- American Society of Clinical Oncology has various topics discussing cancer in young adulthood, including camps and retreats specifically for young adults
Cancer Care has general information about topics related to cancer in young adulthood
- American Cancer Society has discusses various topics relating to all cancer survivors
- National Comprehensive Cancer Network has information about different topics related to being diagnosed with cancer
- Know Cancer Resources provides resources by state for numerous needs
- Ideas for managing sexual functioning during and after cancer treatment
LEGAL AND INSURANCE ISSUES
- Cancer Legal Resources Center
- Musella Foundation Co-Payment Assistance Program Helps people with Glioblastoma Multiforme who have insurance pay for treatments.
- Musella Foundation Drug Assistance Program Helps people (even who do not have brain tumors) who do not have insurance (or who have bad insurance) get a discount for any prescription drug.
- For assistance with Avastin: Genentech Access Solutions telephone number: 866-4-Access
- For assistance with Temodar: Merck Phone: 866-363-6379
- For assitance with the Novocure NovoTTF100-a device: phone: 855.281.9301
- For assistance with Gliadel (1-866-61- 34724
- NeedyMeds.org - Clearinghouse for all drug assistance programs
CancerCare Financial Assistance can help with: Transportation, Home care, Child care, Pain medication, and Lymphedema supplies. Does not cover basic living expenses (such as rent, mortgages, utility payments, or food). Assistance is need based.
Cancer Financial Assistance Coalitionâ€”can search for financial resources by cancer diagnosis or by type of assistance needed
The SAMFund assists young adult survivors with transition into post-treatment life by providing financial support through grants and scholarships. Covers many things such as medical bills, car and health insurance premiums, rent, utilities, tuition & loans, gym memberships, transportation costs. Start taking applications in June of each year.
NeedyMeds may provide assistance with obtaining medications that are not covered by insurance or have a very high copayment.
CancerCare Co-payment Assistance Foundation helps individuals with insurance cover co-pays for treatment of various cancers. Go to the website to find the covered diagnoses and medications.
- Patient Advocate Foundation Via Livestrong SurvivorCare can help locate resources related to employment, finances, insurance, and medication co-pays
- Although the Brenda Mehling Cancer Fund has been temporarily suspended, they provide numerous alternative resources for various needs
LODGING DURING OUTPATIENT CANCER TREATMENT IN ST. LOUIS AREA
HavenHouse provides lodging and support services for families who travel at least 25 miles to receive medical care at a hospital in St. Louis. Initial referral must come through a hospital referral.
The American Cancer Society's Hope Lodge-St. Louis provides a place to stay for those who travel at least 50 miles and receive treatment in the St. Louis area. Must have a referral from your doctor, nurse or social worker verifying treatment
COLLEGE TUITION ASSISTANCE
- FinAid provides links to numerous different college scholarships for cancer survivors, siblings of cancer survivors, and children of cancer survivors
Care Commit Change offers scholarships to help young adult survivors pay for college (may be inactive, the website doesn't look like it's been updated recently)
Cancer and Careers provides information on legal rights and other information related to work
Fertile Hope provides assistance in egg and embryo freezing as well as sperm banking to survivors PRIOR to starting cancer treatment. Fertile Hope doesn't provide funding directly to patients but instead has worked with companies and clinics to arrange for discounted services and donated medications for eligible female cancer patients. When searching for participating locations, searching by state rather than zip code seems to work better
Fertile Hope's assistance for females
- Fertile Hope's assistance for males
- Additional programs which may offer assistance
- Information for men and women about fertility before, during, and after cancer treatment
- General information for females about cancer and fertility
- General information for males about cancer and fertility
DIAGNOSED WHILE PREGNANT
Hope for Two connects women diagnosed with cancer while pregnant to women who have experienced a similar situation
Ulman Cancer Fund for Young Adultsâ€”Peer Mentor Network. Partnered with Imerman Angels (http://www.imermanangels.org/)
American Cancer Society offers an online Cancer Survivors Network with a specific message board for young adult cancer survivors
INDIVIDUAL/SUPPORT GROUP COUNSELING
- Local support groups and other services, not young adult specific
Free over the phone, email firstname.lastname@example.org or call 1-800-813-HOPE (4673)
Free, online or by telephone
Home Remodeling for Disability and Special Needs
- Expertise Information and links to grants to help remodel.