Pediatric Brain Tumor Foundation
Working to eliminate the challenges
of childhood brain tumors
Please leave this field empty

Cure the kids! Give Now

font size AAA

PBTF Announces Release of Spanish-Language Starfolio Resource Notebook for Newly Diagnosed Families

02/23/21

When a child is diagnosed with a brain tumor, countless questions overwhelm families. Questions about types of treatments, how to talk with their children, and how to manage their child’s care at each stage of the journey. Answers are often hard to find. For families who speak Spanish, finding those answers is especially challenging.

To help Spanish-speaking pediatric brain tumor families thrive from the moment of diagnosis, the Pediatric Brain Tumor Foundation is pleased to announce the launch of its Spanish-language Starfolio Resource Notebook. Published with generous support from Coverys, this notebook provides information and practical resources to help families navigate these early days. Children with brain tumors are Stars to the PBTF, so we’ve named this resource the Starfolio in their honor.

“The Pediatric Brain Tumor Foundation's Starfolio Resource Notebook for newly diagnosed families is so impressive and helpful!” writes Stephanie Petruzzi, LCSW, of the Neuro-Oncology Program at UCSF Benioff Children’s Hospital. “Families have said having a place that they can refer to as they navigate their treatment is invaluable. I have referred families to the Starfolio throughout their treatment. Thank you PBTF for creating a Spanish version of this invaluable resource. The Starfolio continues to make a difference to families that have experienced life with a brain tumor.”

Families and healthcare professionals can download the Spanish Starfolio Resource Notebook here.

Experts in the fields of pediatric oncology, education, and survivorship, along with parents, contributed to the notebook, which contains:

  • A wealth of reliable information on childhood brain tumors
  • Tools to help families communicate with their healthcare team
  • Templates to help families manage and organize their child's care
  • Resources to help families as their child returns to school
  • Information about how to navigate the journey at each stage
  • Words of encouragement from other families who have walked a similar path

According to a recent study in Pediatric Blood & Cancer, Zamora et al. conclude, “Language barriers... may negatively impact the quality of informed decision-making and the care experience for Spanish-speaking LEP [Limited English Proficiency] caregivers of pediatric cancer patients. These families may benefit from culturally appropriate Spanish language resources to improve communication.”

When a child is diagnosed with a brain tumor, says the PBTF’s vice president of family support, Kathy Riley, MPH, CHES, “families face many complex challenges in caring for their child. The PBTF strives to support all families who navigate these unimaginable days. I hope that our Spanish-speaking families will find answers to their many questions in the Starfolio Resource Notebook and that they will know the PBTF walks alongside them no matter where their journey leads.”

Families can download a digital copy of the Spanish Starfolio here, or order a free printed copy by contacting the PBTF’s family support team at 800-253-6530, x306 or familysupport@curethekids.org.

The supplemental templates and forms are also available for free download here.

About the Pediatric Brain Tumor Foundation
Every day, 13 children and teens are diagnosed with a brain tumor, the deadliest form of childhood cancer. Every day after, they are in a fight for their life. It is a fight the Pediatric Brain Tumor Foundation is here to help families win. A leader in the brain tumor and childhood cancer communities, PBTF’s mission of Care. Cure. Thrive. reflects its commitment to curing all pediatric brain tumors and transforming how children and their families are cared for. Since 1991, PBTF has provided strategic leadership and funding to accelerate the number of targeted therapies for children battling brain tumors today, while equipping families with the educational resources, financial relief and emotional support they need to navigate their child’s journey. A world without childhood brain tumors is possible when we stand together to effect real, meaningful change. Learn more at www.curethekids.org.