Starfolio Resource Notebook
When your child is diagnosed with a brain tumor, you’ll have lots of questions. Answers may be hard to find. The Starfolio Resource Notebook is designed with you in mind and provides information and practical resources to help you navigate these challenging days.
In the Starfolio, you’ll find:
- A wealth of reliable information on childhood brain tumors
- Tools to help you communicate with your healthcare team
- Templates to help you manage and organize your child's care
- Resources to help you as your child returns to school
- Information about how to navigate your journey at each stage
- Words of encouragement from other families who have walked before you
Children with brain tumors are Stars to the PBTF, so we’ve named this resource the Starfolio in their honor. One of those Stars is Thea Danze. Her mom, Trisha, started the Pennsylvania-based nonprofit Thea’s Star of Hope, which helped fund the Starfolio.
"When Thea was diagnosed nine years ago, we were lost and confused. We were trying to care for her needs in the midst of a crash course in neuro-oncology," Trisha Danze said. "If we had had a tool like the Starfolio to start educating ourselves and organizing her medical information, we could have focused more on her. We’re delighted to help the Pediatric Brain Tumor Foundation make this tool available to other parents so that this time is a little less overwhelming."
How to get your free copy of the Starfolio Resource Notebook:
- Get a digital copy immediately by downloading it here.
- Complete a family profile form to request a printed copy in a zip-up binder.
- The Starfolio’s forms and templates are also available for download and printing here.
If we can help you in any other way or if you would like us to mail you a printed copy of the Starfolio, please contact us at email@example.com. Additional information about the Pediatric Brain Tumor Foundation's family support programs can be found at www.curethekids.org/family-resources.
The Starfolio resource notebook is possible thanks to the generosity of our project funder Coverys and Program Partners Thea’s Star of Hope and the American Legion Child Welfare Foundation.