Resources & Tools to Help Children and Families During COVID-19
No family should ever have to face their child’s brain tumor diagnosis alone. The Pediatric Brain Tumor Foundation is here to support you, your child and your family as you navigate the disruptions caused by COVID-19 and all that comes with a pediatric brain tumor diagnosis.
We offer a variety of family support programs and resources to equip, educate and empower you. You can access any of the following resources without leaving your home.
Imaginary Friend Society (available in English and Spanish)
Through a series of 20 fun, award-winning animated short films, our imaginary friends explain a wide range of complicated cancer topics in a way that kids can understand. The following films address some of the issues you and your family may be facing during COVID-19:
Kids and teens with brain tumors are Stars to the PBTF. Through our Starlight stories, read about the journeys of other families and how they face the challenges that come with a pediatric brain tumor diagnosis.
Starfolio Notebook for Newly Diagnosed Families
The Starfolio is a free resource notebook designed to help families of newly diagnosed brain tumor patients to partner with their child’s healthcare team and to organize medical information during treatment. Click the link above to request a copy and download our family resource templates.
Educational Guides and Videos
The PBTF’s educational guides and videos provide families with additional information on navigating their child's treatment, offer tips on working with their healthcare team and feature leading medical experts speaking on a variety of subjects. Click the link above to view and download these guides and videos.
Survivorship Resource Guidebook
More than 40 expert authors in the fields of pediatric oncology, education, and disability rights, along with parents and survivors, answer questions about what survivors can do to stay healthy mentally and physically, manage their medical care, keep health insurance as they get older, thrive in school, find a job, and navigate life after treatment ends. The comprehensive guidebook is designed to help you partner with your healthcare team and access information as you need it at different stages of your survivorship journey. Click on the link above to download or order your copy.
PBTF staff across the country are here to help and connect your family with additional local resources. If you are a pediatric brain tumor family in need of support, please reach out to your region’s family support contact and regional director listed below. Our national family support hotline can also be reached at 800-253-6530, x306 and firstname.lastname@example.org.
- Central Region: Tammy Bristol and Bob McNamara
- Northeast Region: Icandace Woods and Kimberly Roy-Canning
- Southeast Region: Heather Held and Tammy Bates
- West Region: Cynthia Rodriguez and Valerie Loduem
The following list includes additional COVID-19 resources that are recommended by the PBTF’s family support and research teams.
General COVID-19 Information:
- Centers for Disease Control and Prevention (CDC)
- World Health Organization (WHO)
- Infectious Diseases Society of America (IDSA)
- U.S. Food & Drug Administration (FDA)
Insurance Coverage & Payment – information from the IDSA Resource Center:
- Private Insurance: Insurance Plan Copays and Payments for COVID-19
- Selected Health Insurer Drug Refill Policies: Prescription Policies for COVID-19(.xlsx)
- Telehealth: HIPAA and Telehealth: Restrictions Loosened
- National Medicaid Resources:
- State Medicaid Policies for the Top 15 States Impacted by COVID-19:
New York’s State Medicaid COVID-19 Policies
New Jersey’s State Medicaid COVID-19 Policies
Washington’s State Medicaid COVID-19 Policies
California’s State Medicaid COVID-19 Policies
Florida’s State Medicaid COVID-19 Policies
Michigan’s State Medicaid COVID-19 Policies
Illinois’ State Medicaid COVID-19 Policies
Louisiana’s State Medicaid COVID-19 Policies
Texas’ State Medicaid COVID-19 Policies
Georgia’s State Medicaid COVID-19 Policies
Massachusetts’ State Medicaid COVID-19 Policies
Colorado’s State Medicaid COVID-19 Policies
Pennsylvania’s State Medicaid COVID-19 Policies
Tennessee’s State Medicaid COVID-19 Policies
Ohio’s State Medicaid COVID-19 Policies
Care of Individuals with Cancer during COVID-19
- American Society of Clinical Oncology
- American Cancer Society
- Children's Oncology Group
- National Cancer Institute (NCI)
- St. Jude Children’s Research Hospital COVID-19 Resource Site
Support for Parents and Children
- Centers for Disease Control and Prevention: Managing anxiety and stress
- Child Mind Institute: Talking to kids about COVID-19
- Kennedy Center Education Artist-in-Residence at Home: LUNCH DOODLES with Mo Willems (learners worldwide can draw, doodle and explore new ways of writing by visiting Mo’s studio virtually once a day for the next few weeks)
- National Association of School Psychologists: Talking to children about COVID-19: A Parent Resource
- Public Broadcasting Service (PBS): How to talk to your kids about coronavirus
The Pediatric Brain Tumor Foundation is here for your family throughout and after COVID-19. Find more information and resources in our COVID-19 Resource Center for Families of Children with Brain Tumors.