WE’RE HERE FOR YOU
When a child is diagnosed with a brain tumor, the family may feel forced to navigate this complex journey alone and uninformed. We gauged the opinions of the CBTP Family Council and asked about their greatest unmet needs. Our patient families expressed disappointment in the lack of resources that are easy to comprehend across all aspects of how a diagnosis may impact the family – from making important medical decisions to how their “new normal” might affect every day life. Family resources are essential.
The Children’s Brain Tumor Foundation
Finding Your Way
Over the years, Dr. Mark Souweidane has worked closely with the Children’s Brain Tumor Foundation (CBTF), a renowned nonprofit whose mission is to improve the treatment, quality of life and the long-term outlook for children and families affected by a brain or spinal cord tumor. In previous years, Dr. Souweidane served on the medical advisory board, and in 2020 he is the proud recipient of the CBTF’s Pioneer Award for Pediatric Neurosurgery.
With help from the review of Dr. Souweidane and many of his peers, the Children’s Brain Tumor Foundation has produced a comprehensive resource guide to help provide guidance to families who have a child diagnosed with a brain tumor. The guide is free to all families and addresses a wide range of topics including diagnosis and treatment, family impact, returning to school, and community resources.
With permission from the CBTF, we have included a link to the guide here (English and Spanish), or you can receive a hard copy by request by sending an email to info@cbtf.org or calling 212-448-9494.
For more about how the Children’s Brain Tumor Foundation can help brain tumor families, visit http://cbtf.org.
We are grateful to this organization for producing such a thoughtful and resourceful publication.
DIPG Family Support Group
Sponsored by Marc Jr’s Fdn and the CBTF
When a child is diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) the family is faced with the most difficult and unimaginable journey. Sometimes, the greatest support may come from other families who share this painful diagnosis and truly understand what one another might be going through.
We are grateful to Marc Jr’s Foundation and the Children’s Brain Tumor Foundation for organizing such a heartfelt program that can help these families navigate treatment protocols, discuss different options amongst others who may have tried different treatments, share their triumphs, and support one another in times of great pain.
If your family has been faced with a diagnosis of DIPG, please click on the image for more information about this program.
The Imaginary Friends Society
For Children in Treatment
The Imaginary Friend Society, geared toward children who are faced with a cancer diagnosis, was generously developed by the Pediatric Brain Tumor Foundation. The Imaginary Friend Society includes a cast of characters inspired by the imaginations of kids themselves. Through a series of 20 animated short films, our imaginary friends explain a wide range of complicated cancer topics in a way that kids can understand. Because the more they understand about their treatment, the less scary it will be.
We are grateful to the Pediatric Brain Tumor Foundation for producing such a thoughtful and resourceful website for the children.
Request a Starfolio
Another fantastic resource is available from our friends at the Pediatric Brain Tumor Foundation. The Starfolio notebook includes helpful information about pediatric brain tumors, in addition to tools and templates that help users manage and organize important paperwork. The Starfolio is a binder that can be used to keep important documents in one place.
Newsletters
Stay Informed on News from the CBTP Lab
Our newsletters are a great resource to stay up-to-date on the Children’s Brain Tumor Project. We share quarterly news on scientific discoveries, team growth, peer-reviewed publications, awards and accolades, patient family stories, and events.
For All Childhood Cancer Families
How to Find the Right Organization to Meet your Needs
A childhood cancer diagnosis is so difficult for a family to navigate. Our friends at the Children’s Cancer Association has pulled together a comprehensive resource guide here.
How Can We Help?
We want to hear from you. Please share your ideas with us so we can develop better resources to support your family.
“The lives of these families change in an instant. They are filled with countless questions, debilitating worry, and heightened uncertainty. We want to help ease their burden by sharing information and providing support.”