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 team at Weill Cornell Medicine has posted a comprehensive overview about pediatric brain tumors on the main website.  We encourage you to peruse this material if you are looking for more information about a particular diagnosis among other facts about pediatric brain tumors.
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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.

Newsletters

The quarterly newsletter from the lab at the Children’s Brain Tumor Project is another great way to keep informed about research progress and fundraising efforts.  Check out our newsletters here.
NEWSLETTERS

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.”

Stacia Wagner • CEO, Children’s Brain Tumor Foundation