Tug McGraw Foundation

 

Brain Tumors

Resources

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Patient/Survivor Information- Adult   

T.H.E. BRAIN TRUST (http://www.braintrust.org/)
The mission of T.H.E. BRAIN TRUST is to create a healing exchange of information and support among people affected by neurological disorders including patient-survivors, families, caregivers, health professionals and researchers. Their goal is to provide and improve online communication resources.

 

The Brain Tumor Trials Collaborative (BTTC) (www.bttconline.org)
The Brain Tumor Trials Collaborative (BTTC) was created as a network of medical centers with the expertise and the strong desire to participate in state-of-the-art clinical trials investigating new treatments for malignant brain tumors. The University of Texas M. D. Anderson Cancer Center serves as the lead institution for the collaborative of 15 Institutions around the country.

Central New Jersey Brain Tumor Support Group (http://www.njbt.org/)
The Central New Jersey Brain Tumor Support Group goal is to provide personal and group support for survivors, their families, friends and the medical community and to exceed all boundaries so that no one will have to face a brain tumor alone. It is their determination to inspire hope in the present and in the future.

 

Chemocare.com (www.chemocare.com)
This website is designed to provide the latest information on chemotherapy to patients and their families, caregivers and friends and to serve as a supplementary tool to the healthcare professional. Chemocare is a program of the Scott Hamilton CARES initiative.

Gilda’s Club Worldwide (www.gildasclub.org)
Gilda's Club provides places where men, women and children with cancer and their families and friends join with others to build social and emotional support as a supplement to medical care. Free of charge and non-profit, Gilda's Clubs offer support and networking groups, lectures, workshops and social events in a nonresidential, home-like setting. Funding is solicited from private individuals, corporations and foundations.

HealthiNation (www.healthination.com)
HealthiNation is a digital health lifestyle network that’s taken a completely fresh approach to improving health literacy, using short, easy-to-understand, interactive digital video.

Inspiration Hospice (http://www.inspirationhospice.com/)
Inspiration Hospice provides the highest quality of hospice care to patients, their families and significant other care providers, developing professional healthcare partnerships, raising the care standard in the communities served and serving as the hospice employer of choice.

Meningioma Mommas (http://www.meningiomamommas.org/)
Meningioma Mommas is an online support group for all of those affected by meningioma brain tumors.

Musella Foundation (http://www.virtualtrials.com/)
The Musella Foundation For Brain Tumor Research is a 501(c)3 non-profit organization dedicated to improving the quality of life and survival times for brain tumor patients. They will attempt to achieve that goal by using computer technology to streamline the flow of information, organize the brain tumor community and raise money for brain tumor research.

OncoLink, the website of the University of Pennsylvania Cancer Center (www.oncolink.upenn.edu)
This site offers an unmoderated discussion list for parents, siblings or friends of cancer patients; an e-mail discussion group about hospice-related issues; an extensive bibliography of issues related to caregiving; and an in-depth caregiver education course.

 

OncologyStat (http://www.oncologystat.com)
OncologySTAT, a non-federal website, integrates a multitude of professional cancer information sources, such as peer-reviewed research, news and regulatory updates, a professional drug monograph and interactions database, chemotherapy regimens, and conference coverage into one online destination. Information and educational materials are delivered across multiple media formats: text, audio, video, interactive, user-generated forums, etc. to gain immediate integrated access to the latest evidence-based research, news, treatment and decision support information.

 

 

Patient/Survivor Information- Pediatric

Brain Tumor Foundation for Children (http://braintumorkids.org)
The mission of the Brain Tumor Foundation for Children is: 1) to provide emotional and informational support to families of children with brain tumors, 2) to provide public education and awareness of the disease, and 3) to raise funds to support research for a cure and for the improvement in the treatment and the quality of life of the victims of pediatric brain tumor disease.

 

Childhood Brain Tumor Foundation (www.childhoodbraintumor.org/)
CBTF’s mission is to raise funds for scientific research and awareness of this devastating disease and to improve the prognosis and quality of life for those affected. CBTF offers informational materials and referrals.

Children's Brain Tumor Foundation (http://www.cbtf.org)
Our mission is to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.

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

Pediatric Brain Tumor Foundation (www.pbtfus.org)
The Pediatric Brain Tumor Foundation (PBTF) is a 501(c)(3) nonprofit charitable organization that seeks to

  • Find the cause of and cure for childhood brain tumors by supporting medical research
  • Increase public awareness about the severity and prevalence of childhood brain tumors
  • Aid in the early detection and treatment of childhood brain tumors
  • Support a national database on all primary brain tumors
  • Provide educational and emotional support for children and families affected by this life-threatening disease

 

PLGA Foundation (www.fightplga.org/)
The PLGA Foundation works to raise awareness and funds to cure Pediatric Low Grade Astrocytomas.

 

 

Caregiver/Family Resources

T.H.E. BRAIN TRUST (http://www.braintrust.org)
The mission of T.H.E. BRAIN TRUST is to create a healing exchange of information and support among People affected by neurological disorders including patient-survivors, families, caregivers, health professionals and researchers. Their goal is to provide and improve online communication resources.

 

Camp Good Days & Special Times (www.campgooddays.org)
Camp Good Days is a free-of-charge nonprofit dedicated to improving the quality of life for kids with cancer and their families. They provide programs, activities and services year-round, highlighted by a week of summer camp at our recreational facility on Keuka Lake in Branchport, NY. These activities provide a regular, dependable opportunity for fun and laughter away from the sterile environment of hospitals, which these children have been forced to become accustomed to.

 

Caregiver.com (www.caregiver911.com)
Their site provides a comprehensive list of quality links on caregiving on the Internet. Also includes listings of other resources as well as an "Ask Dr. Caregiver" section.

 

Caring Bridge (www.caringbridge.org)
A free CaringBridge website helps keep loved ones informed during difficult times. In return, family and friends give patients and caregivers support through guestbook messages.

 

Chemocare.com (www.chemocare.com)
This website is designed to provide the latest information on chemotherapy to patients and their families, caregivers and friends and to serve as a supplementary tool to the healthcare professional. Chemocare is a program of the Scott Hamilton CARES initiative.

 

Family Caregiver’s Alliance (www.caregiver.org)
The alliance supports and assists caregivers of brain-impaired adults through education, research, services and advocacy. The organization provides a clearinghouse of information and resources related to medical, social, public policy and caregiving issues related to brain impairments. Their website includes an online support group for friends and family members caring for an adult with cognitive disabilities. It is an excellent resource for information on managing problem behaviors.

Gilda’s Club Worldwide (www.gildasclub.org)
Gilda's Club provides places where men, women, and children with cancer and their families and friends join with others to build social and emotional support as a supplement to medical care. Free of charge and non-profit, Gilda's Clubs offer support and networking groups, lectures, workshops and social events in a nonresidential, home-like setting. Funding is solicited from private individuals, corporations, and foundations.

Inspiration Hospice (http://www.inspirationhospice.com/)
Inspiration Hospice provides the highest quality of hospice care to patients, their families and significant other care providers, developing professional healthcare partnerships, raising the care standard in the communities served and serving as the hospice employer of choice.

National Family Caregivers Association (www.nfcacares.org)
This group provides education and information services, support and validation for caregivers, public awareness and advocacy devoted to improving the quality of life of caregivers. Services for family caregivers include a quarterly newsletter, peer support network, educational materials, national resource referrals and a bereavement program.

OncoLink, the website of the University of Pennsylvania Cancer Center, (www.oncolink.upenn.edu)
Their site offers an unmoderated discussion list for parents, siblings or friends of cancer patients; an e-mail discussion group about hospice-related issues; an extensive bibliography of issues related to caregiving; and an in-depth caregiver education course.

SuperSibs! (www.supersibs.org)
The mission of SuperSibs! is to honor, support and recognize the brothers and sisters of children with cancer. By reaching out to the siblings of those over 12,600 children diagnosed with cancer each year in the United States and Canada, the siblings will feel valued, validated, heard, supported and delighted as recipients of SuperSibs! services and as participants in SuperSibs! activities.

We Can (www.wecan.cc)
A parent-initiated pediatric brain tumor network that serves greater Los Angeles, Bakersfield, Sacramento and the San Francisco Bay area. We Can offers the Veteran Parent Program (one-on-one mentoring), parent support and education meetings, Sibling Workshops, a Teen Group and Family Camp. The life situations of We Can members range from families with newly diagnosed patients, children/teenagers still in treatment and acute recovery to parents of adult children treated more than a decade ago. Our network includes families who have experienced end-of-life care, death and bereavement.

 

 

Hospitals and Treatment Facilities

The Tug McGraw Foundation has worked with these leading national brain tumor centers. These and other top institutions can offer second-opinions, clinical trial information and additional resources that may not be available to all patients in their local communities. Anyone facing a brain tumor diagnosis is encouraged to contact a national brain tumor center to learn more about treatment options.

Duke University – Preston Robert Tisch Brain Tumor Center
http://www.cancer.duke.edu/btc/

Jefferson Hospital for Neuroscience

http://www.jeffersonhospital.org/neuroscience/article10689.html

Mayo Clinic
http://www.mayoclinic.org/brain-tumors/

 

Moffitt Cancer Center
http://www.moffitt.org/cancer-types--treatment/cancers-we-treat/brain-cancer

 

MD Anderson Brain & Spine Center
http://www.mdanderson.org/Care_Centers/BrainSpinal/

UCLA Brain Tumor Program
http://neurosurgery.ucla.edu/Programs/BrainTumor/BrainTumor_Intro.html

UCSF Brain Tumor Research Center

http://neurosurgery.medschool.ucsf.edu/index.html

UW Madison
http://www.humonc.wisc.edu/

Vanderbilt Brain Tumor Center
(http://www.vanderbiltbraintumorcenter.com)

 

 

Brain Tumor Foundations – National

Acoustic Neuroma Association (http://anausa.org)
ANA is a patient member organization, providing information and support to persons diagnosed with or treated for acoustic neuroma and other benign tumors of the cranial nerves. 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 and maintains this website for patient information and discussion.


Accelerate Brain Cancer Cure (www.abc2.org)
Accelerate Brain Cancer Cure has a singular focus - to hasten the discovery of a cure for brain cancer. Accelerate Brain Cancer Cure inspires new hope for a cure by using a results-driven business model to bring more treatments to patients, stimulate research & development and otherwise support the accelerated development of new therapies for brain cancer.


American Brain Tumor Association (www.abta.org)
The American Brain Tumor Association exists to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families.


American Cancer Society (www.cancer.org)
The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors with the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis.


T.H.E. BRAIN TRUST (http://www.braintrust.org/)
The mission of T.H.E. BRAIN TRUST is to create a healing exchange of information and support among people affected by neurological disorders including patient-survivors, families, caregivers, health professionals and researchers. Their goal is to provide and improve online communication resources.


Musella Foundation (http://www.virtualtrials.com/)
The Musella Foundation for Brain Tumor Research is a 501(c)3 non-profit organization dedicated to improving the quality of life and survival times for brain tumor patients. They will attempt to achieve that goal by using computer technology to streamline the flow of information, organize the brain tumor community and raise money for brain tumor research.

 

National Brain Tumor Society (http:www.braintumor.org)

National Brain Tumor Society (NBTS) is a nonprofit organization committed to finding a cure for brain tumors. They aggressively drive strategic research, advocate for public policies that meet the critical needs of the brain tumor community, and provide patient information.

 

 

Brain Tumor Foundations - Regional

BeHeadstrong Foundation (www.beheadstrong.org) – Kansas City Area
Established in 2003 by a group of brain tumor survivors, their families and friends, the BeHeadstrong Foundation is a 501(c)3 non-profit organization dedicated to supporting the brain tumor community.

Brain Tumor Resource and Information Network (B.R.A.I.N.) (http://www.brainsite.org) - Virginia
Brain Tumor Resource and Information Network is a volunteer non-profit 501(c)3 organization dedicated to improving the quality of life of brain tumor survivors, increasing public awareness and raising funds to aid in the research to eliminate the disease. B.R.A.I.N.’s mission is to support each other, care for each other and give each other strength and hope.

 

Chris Elliott Fund for Glioblastoma Brain Cancer Research (www.ChrisElliottFund.org) – Washington State
The Chris Elliott Fund supports cutting-edge glioblastoma research and care and provides information, resources and support for people living with terminal glioblastoma brain tumors.

 

Mid-Atlantic Brain Tumor Foundation (www.mabtf.org)
The Mid-Atlantic Brain Tumor Foundation Ltd. (MABTF) is a non-profit organization that was founded on January 1, 2003 and is run by volunteers. It was created solely to help raise awareness and funds needed for the vital research used to find treatments and cures for brain tumors.

 

Oklahoma Brain Tumor Foundation (www.okbtf.org) – Oklahoma
The Oklahoma Brain Tumor Foundation (OKBTF) is a nonprofit organization that provides education, advocacy and support for Oklahomans with brain tumors and their families to improve their quality of life and help find a cure.

 

Southeastern Brain Tumor Foundation (www.sbtf.org) – Atlanta, Georgia
Their mission is to improve the quality of life for brain tumor patients and their families. By offering information, education and support services, they aspire to instill hope, knowledge and comfort to all involved. We also raise funds for research and medical personnel so that a cure can be found.

 

 

Brain Tumor Foundations - International

Brain Tumor Australia (http://www.bta.org.au/)
BTA provides a support network for patients, caregivers, family members and health professionals.

 

Brain Tumour Foundation of Canada (http://www.braintumour.ca)
Brain Tumour Foundation of Canada is a national, not-for-profit organization dedicated to reaching every person in Canada affected by a brain tumour with support, education and information, and to fund brain tumour research.

 

Brain Tumour Foundation of India (http://www.braintumourindia.com/)
BTF of India is a charity concerned with improving the care and treatment available to people with brain tumours and their families. BTF works in partnership with other organizations to develop and support services for people with brain tumours in and around Bombay; they are hoping to expand services to involve the whole country.

 

The International Brain Tumour Alliance (http://www.theibta.org)
The IBTA seeks to be an alliance of the support, advocacy and information groups for brain tumour patients and caregivers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours.