The Starfolio is a free resource notebook designed to help families of newly diagnosed brain tumor patients partner with their child’s healthcare team and to organize medical information during treatment.
The portable, zip-up binder contains basic information on childhood brain tumors and templates and tools families can use to collect and keep track of treatments, medications, patient education materials, information sheets and CDs of scans.
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."
The Starfolio resource notebook is possible thanks to the generosity of our project funder: