2bMeThis site is excellent for teenagers, especially ages 13-16 years old. It has lots of helpful tips on hair loss, wigs, skin care, and appearanceAmerican Cancer SocietyASC has online groups for childhood and young adult survivors.
Parker’s Brain StormIf you are interested in watching the story of Parker’s Brain Storm come alive by viewing each page while listening to the character’s speak, please click here.
The following resources can help survivors locate scholarships and find pertinent information regarding educational needs that may be unique to them. Scholarship Resources:
The following is a list of organizations and government funded programs that offer information and support for families dealing with cancer. They cover a wide range of needs including medical equipment coverage, costs of travel, utility assistance and more. Some of these are specific to...
Financial AssistanceThe following list of organizations may provide financial assistance toward funeral and burial expenses Andre Sobel River of Lifewww.andreriveroflife.org Catastrophic Illness in Children Relief Fundhttp://www.mass.gov/cicrf/
Navigating the health insurance system with a child who is newly diagnosed with a brain tumor can be overwhelming. The following resources offer information about many of the questions you may have as well as options for low-income families and the uninsured.
Hotel LodgingIf you need to plan for accommodations, speak to the social worker or visitor services department at the hospital where you need to be. Some hotel chains provide rooms to a family at no charge if a child must go into the hospital for an early-morning or overnight procedure. Local...
Occasionally children must travel great distances to receive appropriate, specialized medical care.Air TransportationMany airlines have courtesy fares for a child and accompanying parent. Social workers may assist you and provide this information, but it may be helpful to contact each individual...
Keeping track of new information after you child has been diagnosed with a brain tumor can be a challenge. Knowing what's important and remembering everything you are told can present challenges. The following are a list of suggested questions you can ask your child's doctor at...
The following is a list of resources that can help with utlility assistance for certain low-income families. Campaign for Low Income Energy AssistanceProvides national assistance for energy needsNational Energy Assistance Director's Association: State Energy Assistance Directors...
The CBTF tradition of parents reaching out, offering support and information to others, so no one needs to be alone, was the reason the P2PBag program was developed in 2004. Board Member Bonnie Adlman suggested CBTF create a P2P Bag that includes information and supplies she felt would have been...
The following are a list of resources that are available to address the needs of brain tumor patients and families. They cover topics such as awareness, advocacy, education and support. Some of them are region specific.
Looking for a job can be intimidating. If you are in need of some form of accommodations in order to do your job, asking for them can be embarrassing and may feel awkward. Here are some resources that will let you know what your rights are, give you ideas on modifications, and help you...
The following are camps and wish granting resources that are offered to pediatric cancer survivors and their families.CampsCamp Mak-a-DreamCamp Mak-a-Dream offers a cost free, medically supervised retreat in Montana to children and families affected by cancer. There are diagnosis and age...
Dealing with a brain tumor when you are a teenager or a young adult, brings about a whole new set of challenges. Whether you were diagnosed when you were a child, a teenager or a young adult, these resources may help you. each site and group has its own personality. Find a group you can relate to....
International Internet California Colorado Connecticut Florida Georgia Illinois Iowa Maine Maryland Massachusetts Michigan New Jersey New York North & South Carolina Ohio Oregon Pennsylvania Tennessee Texas Virginia<
The following books may be helpful to parents, siblings, grandparents, family members and friends who have lost a loved one. Please note that we are not familiar with every book on this list. However, all books have been recommended by parents and professionals. When possible, we included a...
A Resource Guide for Parents of Children with Brain or Spinal Cord Tumors
Our little book is our most recognized support service. Physicians, social workers, nurses, and parents alike describe our Resource Guide as an important information source for families upon learning of their child’s...
Children's Brain Tumor Foundation provides families with educational information, various types of resources, and referrals to other support services they may need. We partner with different organizations to strengthen our community and build the support networks available for families....
We often hear questions pertaining to proton therapy and therefore we wanted to provide members of the CBTF community with a resource to provide you with additional information on proton therapy. The National Association for Proton Therapy (NAPT) is a non-profit organization supported by...
Most high school seniors will agree that finding the perfect college is a cumbersome, intimidating task. Those students who have either a physical or learning disability have the extra burden of finding a college with the appropriate support staff and accommodations necessary willing to meet the...
Association of Cancer Online Resources
http://www.acor.org/support.html
Low grade Glioma List
LGgliomakids-subscribe@yahoogroups.com
Medulloblastoma Mailing List
medulloblastoma-subscribe@yahoogroups.com
Pediatric Tumors Mailing List
pediatricbraintumors-subscribe@yahoogroups.com
Optic Glioma...
Center Watch
www.centerwatch.com
CenterWatch is a wonderful source of news, directories, analysis, and proprietary market research for clinical research professionals. The website provides proprietary data and informational analysis on clinical trials through a variety of newsletters, books,...
