|
|
 |
Resources
Our list of resources for patients and caregivers includes links to organizations that provide information and support, top treatment facilities with which we have worked directly, suggested books and other resources. Whether you have a simple question or are facing major health decisions, you are likely to find helpful assistance and inspiration.
Patient/Survivor Information- Adult
The B.R.A.I.N. 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. Our goal is to provide and improve online communication resources.
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. CNJBTSG goal is to exceed all boundaries so that no one will have to face a brain tumor alone. It is our determination to inspire hope in the present and in the future. Contact number: 908.685.0917.
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 serves as a supplementary tool to the healthcare professional. Chemocare is a program of the Scott Hamilton CARES initiative.
Gilda’s Club World Wide (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. Read “Stop Googling Your Symptoms” on the site and learn more about this innovative approach to healthy education.
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.
Lance Armstrong Foundation (www.livestrong.org)
You can order a free Survivorship Notebook that includes survivor tools, stories, and topics to help keep you organized and inspired. Go to “Shop” and click on “Survivorship Notebook.”
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. We 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)
Non-Federal Website: OncologySTAT 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.
Your Cancer: Your Choice (www.YourCancerYourChoice.com)
Pharmacylics, Inc. develops innovative products to treat cancer and other serious diseases. They developed this site to keep patients, families, and doctors informed on the debate regarding how the Food and Drug Administration addresses standards of drug efficacy with the needs of terminally ill cancer patients.
back to top
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.
Toll-free Patient Support Line: 866-228-HOPE
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.
back to top
Caregiver/Family Resources
The B.R.A.I.N. 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. Our 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. We 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)
This 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 patient and caregiver 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 serves 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. An excellent resource for information on managing problem behaviors!
Gilda’s Club World Wide (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)
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.
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.
back to top
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/)
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)
back to top
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 goal of the American Cancer Society (ACS) is to prevent cancer, save lives, and diminish suffering from cancer. Visit ACS’s website to find information and local services.
The B.R.A.I.N. 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. Our goal is to provide and improve online communication resources.
Brain Tumor Action Network (www.btan.org)
The Brain Tumor Action Network is a not-for-profit 501(c)(3) organization established to bring awareness to the general public about brain tumors and to educate and empower brain tumor survivors, their families and friends.
Brain Tumor Society (www.tbts.org)
BTS offers the latest information for the entire brain tumor community, from newly diagnosed patients, to survivors, families and healthcare professionals. Their intent is to provide easy access to the resources you need.
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. We 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 Foundation (www.braintumor.org)
NBTF 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. 1.800.934.CURE
North American Brain Tumor Coalition (www.nabraintumor.org)
The NABTC is dedicated to improving the prognosis and quality of life of brain tumor patients. The Coalition educates policymakers, and advocates for increased research into brain tumor treatments, causes, and rehabilitation.
back to top
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. 100% of CEF's proceeds and 80% of all donations received go to high grade Astrocytoma and Glioblastoma brain cancer research, education, and advocacy outreach programs. CEF has supported research at the Dana-Farber Cancer Institute, a world leader in cancer research and care and Harvard University affiliate.
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 solely created to help raise awareness and the 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
Our mission is to improve the quality of life for brain tumor patients and their families. By offering information, education, and support services, we 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.
back to top
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 Tumor 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 funding brain tumour research.
Brain Tumor 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, hoping to expand services to involve the whole country.
The International Brain Tumour Alliance (http://www.theibta.org)
The IBTA, based in the United Kingdom, 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.
back to top
Inspiration
David M. Bailey (www.davidmbailey.com)
This affecting and electrifying singer/songwriter was diagnosed with a brain tumor and given only months to live in June of 1996. 10 years and 14 albums later, David continues to share his gift of music and passion to inspire others in their survivorship. Visit his website to hear his music, see him perform, or read more of his remarkable story.
DivineCaroline (www.divinecaroline.com)
The DivineCaroline website has been established to provide voice and inspiration to women - a safe place where women can join together, express themselves, and find laughter, support, information and encouragement in an environment where life isn't always fair or beautiful...but is always embraced.
back to top
Books and Publications – Adult
Curveball: When Life Throws You a Brain Tumor by Liz Holzemer
Wife of MLB pitcher Mark Holzemer, Liz was enjoying a successful career as a journalist when an MRI revealed a baseball-size brain tumor called a meningioma. Told with clarity and unwavering humor, this book shows how she emerged from this frightening diagnosis and two brain surgeries retaining her remarkable spirit of survival and renewed sense of purpose and hope.
Click here to get your copy
How to Get the Health Care You Want by Laura L. Casey
“This book should be required reading for any patient seeking medical care. Moreover, many doctors would learn valuable lessons as well, especially regarding how to react to the different styles of interaction a physician can bring into an examining room”
- Henry S. Friedman, M.D., The Tug McGraw Research Center at Duke.
Click here to get your copy.
I Had Brain Surgery, What's Your Excuse? by Suzy Becker
Cartoonist and writer Becker’s deeply personal and surprisingly funny memoir describes her journey, from the initial diagnosis and brain surgery to the long, slow recovery, when unpredicted side effects interfered with her speech and thought processes. With the help of others and her slowly returning sense of humor, she recreates a life she recognizes as her own.
Click here to get your copy.
Living with a Brain Tumor: Dr. Peter Black's Guide to Taking Control of Your Treatment by Dr. Peter Black
Dr. Peter McLaren Black has been chairman of the Department of Neurosurgery at Boston's Brigham and Women's Hospital and Children's Hospital since 1987. He is also the chief of neurosurgical oncology at the Dana Farber Cancer Institute.
Click here to get your copy.
That's Uncacceptable: Surviving a Brain Tumor My Personal Story by Rebecca L. Libutti
"With determination and wit, Rebecca Libutti explores the many facets of hope while facing a potentially terminal form of cancer. While searching for a means of recovery, Libutti discovers that hope also entails the possibility of deciding her appropriate course of treatment as well as exploring spiritual strengths. For those of us who know someone with a serious illness and for those of us who admire courage. Libutti's narrative inspires and informs."- Ann Short Chirhart, PhD, Smithsonian Institute, National Museum of History.
Click here to get your copy.
Ya Gotta Believe: My Roller-Coaster Life As a Screwball Pitcher and Part-Time Father, and My Hope-Filled Fight Against Brain Cancer by Tug McGraw
"Ya Gotta Believe!" was the rallying cry of the screwy left-handed relief pitcher who made millions of fans believe in the impossible, especially when-as a member of the Philadelphia Phillies-he struck out Kansas City's Willie Wilson to win the 1980 World Series. Here is the story of a man who rose to fame, fell from grace, battled brain cancer, and became a champion not just in baseball, but in life.
Click here to get your copy of the hardcover.
back to top
Books and Publications - Pediatric
The Boy of Steel by Ray Negron
)Young Michael Steel loves to watch the New York Yankees on TV—from his hospital bed. Michael has brain cancer. But when Yankee second baseman Robinson Cano visits Michael in the hospital, Michael embarks on an unexpected and wonderful journey when he becomes a Yankee batboy for a day. It's his baseball dream come true!
Click here to get your copy.
A Resource Guide for Parents of Children with Brain or Spinal Cord Tumors
A free publication of the Children’s Brain Tumor Foundation. Currently in its fourth edition, the Resource Guide, which remains a publication written by parents, survivors and professionals, continues to provide a comprehensive overview of the diagnosis and treatment of childhood brain tumors, family impact of the diagnosis, and resources available within the community.
Click here to get your copy.
Parker’s Brain Storm
A free publication of the Children’s Brain Tumor Foundation. Parker’s Brain Storm is a child-friendly story describing the process of diagnosis and surgery from the prospective of a little bear named Parker. In this colorful, 16-page book, Parker bear is not feeling very well and his Mom brings him to see a special doctor to find out what is causing little Parker to feel ill and to help him feel better.
Click here to get your copy.
back to top
|
|
