Many sites already exist and do an excellent job of providing information on brain tumors, both adult and pediatric. Over the course of our research, we have turned to the following for assistance and education. We hold you will find this list valuable.
St. Jude Hospital is a leader for clinical trials and has a website devoted to helping pediatric cancer patients at http://www.together.stjude.org
General Research on Brain Tumors
The Cancer Support Community provides a general knowledge of many tumor types and offers reading and resource support for those living with cancer. Information on brain tumors can be found at:
The National Cancer Institute (NCI) has general information on all cancer types. NCI sponsored clinical trials can be found here:
Accelerate Brain Cancer Cure (ABC-2) was founded after Steve Case’s brother Dan lost his life to brain cancer. They bring a venture approach to funding and expediting brain cancer research, particularly focused on high-grade glioblastoma. Their guidance page has easy-to-digest information for those seeking early stage understanding of brain cancer.
The National Brain Tumor Society is the largest nonprofit dedicated to the brain tumor community in the U.S. They have a pediatric brain tumor research collaborative, focused on high-grade gliomas only. More information can be found at:
Learn About Childhood/Pediatric Tumors
The Childhood Brain Tumor Brain Tumor Foundation, http://www.childhoodbraintumor.org is a volunteer-run organization driven to help educate families whose children have been diagnosed with brain tumors. Our mission is to provide grant funding for researchers to further the cause to find a cure. This site gives general knowledge of many aspects of care from brain tumor types, imaging, to late effects of treatments and treatment types.
St. Baldrick’s Foundation is focused on all types of childhood cancer. They have a resource page for astrocytomas that can be found here: https://www.stbaldricks.org/blog/post/types-of-childhood-cancer-astrocytoma
The MaxLove project (http://www.maxloveproject.org) is an innovative nonprofit organization that advocates for the integration of evidence-based quality of life care and integrative medicine into standard pediatric cancer care. They support pioneering cancer research, family-centered programs, easy-to-understand health education, and support for complementary and preventive therapies in healthcare settings. Each of these initiatives aims to improve quality of life and lower health risks for childhood cancer patients, survivors, and their families.
A Kids’s Brain Tumor Cure funds research for pediatric low-grade gliomas. The have information on pediatric brain tumors types as well as symptoms, treatments, and other related content at: https://akidsbraintumorcure.org/childhood-brain-tumors/brain-tumor-types
The Pediatric Brain Tumor Consortium is composed of 11 academic centers and children’s hospitals located across the United States which are competitively selected based on their scientific excellence and clinical expertise in pediatric brain tumors. The institution’s and contact information can be found here: https://www.pbtc.org/institutions.html
Support for Pediatric Brain Tumor Patients
Summer camp for brain tumor patients at Camp One Step: https://camponestep.org/brain-tumor-family-camp/
Family resources including camps, scholarships, financial aid and advocacy can be found at the Pediatric Brain Tumor Foundation’s Cure the Kids site: http://www.curethekids.org/family-resources/get-support/resources
Camp Sunshine offers week-long camps for patients and families in Maine. www.campsunshine.org
Sprout Therapeutic Horseback riding program in Aldie, Virginia. Sprout programs promote physical, social, emotional and cognitive growth. Equine activities and therapies provide adapted and individualized opportunities for recreation, socialization and skill building. http://www.sproutcenter.org
Help for Caregivers & Parents
Here are some resources for people seeking information about PTSD and its symptoms in parents.
www.nctsn.org: The National Child Traumatic Stress Network focuses on different types of child trauma and offers resources for many groups, including parents
www.healthcaretoolbox.org: A site developed by the Center for Pediatric Traumatic Stress with information about trauma related to pediatric illness and injury and includes some resources for parents
www.aftertheinjury.org: A site sponsored by the Center for Injury Research and Prevention at Children’s Hospital of Philadelphia that offers resources for children and adolescents with injuries and also their caregivers, including videos and other tools
www.copingspace.org: Started by parents of a child who died of cancer, the site offers resources and support for parents and families, including information about PTSD