Families with children battling brain tumors wrestle with a host of issues, which, despite their significance, often lack readily apparent centralized sources of information. The purpose of this section is to address some of these issues and offer potential resources for information on the following topics:

 

Organization Description
Neurological Deficits/Brain Rehabilitation
Neuropsychology Central

Neuropsychology Central is an organization which provides links to resources which help in the assessment and treatment of neuropsychological deficits from a variety of sources, including brain tumors.

Center for Neuro Skills

The TBI Resource Guide is the internet’s central source of information, services and products relating to traumatic brain injury, brain injury recovery and post-acute rehabilitation. This site provides a resource guide which will help parents looking for innovative techniques for helping rehabilitate brain injury patients.

Brain Tumors and Fatigue (Adobe PDF)

The Brain Science Foundation sponsored a study on the effects of brain tumors on fatigue.

Cancer Books for Kids
The Boy of Steel The Boy of Steel is loosely based on the true story of Michael Steel, a devoted Yankee fan who was stricken with brain cancer at a tender age. Michael’s unrelenting spirit and courage shines through in the story, making him a very powerful character. The Boy of Steel represents the strength of all children battling this terrible disease, and teaches an important lesson: Never stop fighting!
Nutrition
Maximize Your Cancer Therapy with Nutrition and Herbs

Nutritional Solutions helps to maximize your cancer therapy with nourishing foods, nutrients and herbs that enhance the efficacy of your surgery, radiation and/or chemotherapy treatments, while safely reducing their toxic side effects. Utilize cutting-edge, scientifically-based strategies to help control your cancer with wholesome foods and natural dietary supplements

The Ketogenic Diet’s Effect on Brain Cancer This study looks at the efficacy of the Ketogenic Diet on the development of brain tumors in mice.
Targeting Energy Metabolism Review and Hypothesis of targeting energy and metabolism in brain cancer patients
Ketonegnic Diets and Metabolism of Tumors Effects of Ketonegnic Diets and Metabolism of Tumors on Nutritional Status of Pediatric Oncology Patients: Two Case Reports
Education
Educating Brain Tumor Kids

The purpose of this site is to create a unique education resource center for teachers, schools, parents, and social workers on the subject of educating children with Brain Tumors (medulloblastoma, astrocytoma, ependymoma, brain stem glioma, etc.).

The School Liaison Program at the Dana Farber Cancer Institute The School Liaison Program (SLP) in the Division of Pediatric Psychosocial Services at the Dana-Farber Cancer Institute provides school consultation to patients who have a diagnosis involving the central nervous system or who have completed treatment involving the central nervous system. Consultation about the cognitive late effects of treatment is provided to assist parents in understanding and advocating for their child’s learning needs.
National Dissemination Center for Kids with Disabilities The National Dissemination Center for Kids with Disabilities serves the nation as a central source of information on:

  • disabilities in infants, toddlers, children, and youth,
  • IDEA, which is the law authorizing special education,
  • No Child Left Behind (as it relates to children with disabilities), and
  • research-based information on effective educational practices.
Wrightslaw Special Education Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
Assistive Technology Axistive is the world’s leading news portal for assistive technology, providing a wide range of free services including product reviews, industry news, market trends, workshops, downloads, and product and organization information.The mission of Axistive is to provide free, accessible and objective information on assistive technology products, organizations and services.
Making Kids’ Dreams Come True
Give Kids the World

Give Kids The World Village is a non-profit resort that creates magical memories for children with life-threatening illnesses and their families. Wish-granting organizations coordinate transportation to Orlando, while Give Kids The World provides accommodations at its whimsical resort, donates attractions tickets, and meals for a cost-free, week-long fantasy vacation. Since its founding in 1986, Give Kids The World has welcomed families from all 50 states and over 50 countries.

Make A Wish Foundation Since 1980, the Make-A-Wish Foundation® has enriched the lives of children with life-threatening medical conditions through its wish-granting work. We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.
Head to Hollywood Head to Hollywood (H2H) is a non-profit organization that provides comfort, escape and emotional healing to brain tumor survivors and their families in the form of access to star-studded events, concerts and parties, movie and TV studio tours and pampering at celebrity spas and beauty salons. H2H is the only program of its kind dedicated to giving brain tumor survivors of all ages and their families an all-access pass into a world usually only reserved for celebrities. H2H also works to raise public awareness about brain tumors by hosting public events and fundraisers, and through its support of research and educational programs.
Starlight Starbright Starlight Starbright Children’s Foundation has dedicated itself to improving the quality of life for children with serious medical conditions by providing entertainment, education and family activities that help them cope with the pain, fear and isolation of prolonged illness.

Editors note: The PLGA Foundation has provided these connections as a service to our readership. We are entirely a third party to these entities and therefore do not endorse any one site. If you have other resources to recommend, please email us at [email protected].