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.
Teen and Young Adults Facing Surgery
YOU ARE NOT ALONE
The Brain Tumor Patient Companionship Program is designed to support patients facing brain surgery and treatment by pairing them with other previously-treated young patients who have been through similar experiences. In particular, this program was created to help teens and young adults prepare for brain surgery by connecting with peers who have already experienced it.
This initiative provides a unique opportunity for current patients to engage with past patients who can relate to their challenges, fears, and hopes on a deeply personal level. Through one-on-one conversations and shared activities, these peer connections aim to help foster friendships, offer emotional support, and create a shared sense of community. By talking to others who have faced and overcome similar medical journeys, young patients can find camaraderie and comfort in knowing that they are not alone in their fight, and that support can extend beyond hospital walls.
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.”