Two children in bright red t-shirts stand together at a Children's Brain Tumor Foundation event.

Children’s Brain Tumor Foundation – Together we are Stronger!

When a child is diagnosed with a brain or spinal cord tumor, a family is thrown into an unfamiliar world that lasts well beyond diagnosis and treatment. It is a journey that lasts a lifetime, but no family has to go through it alone.

For over thirty years, the Children's Brain Tumor Foundation (CBTF) has been committed to improving the treatment, quality of life, and long-term outlook for survivors and families impacted by brain and spinal cord tumors. CBTF’s goal is to provide knowledge and support to every family member throughout the continuum of care.

Families tell us that they often feel isolated in their journey as it is challenging to meet other families in the “same boat.”  We are dedicated to providing peer and professional support to each person in the family through our online and peer mentoring programs. Currently, we offer online groups for Young Survivors & Parents of Young Survivors, Teens, Young Adults, Parents of Young Adult Survivors, Parents of DIPG & DMG patients, Siblings of Survivors, and  Mindfulness & Gentle Yoga. We are also bringing back our signature in-person events this Spring, including Weekend Adventures for Survivors, the Young Adult Heads Up Conference, the Teen Heads Up Conference (Camp Mak-a-Dream Gold Creek, MT), and the Just Us, Dad and Survivor Retreat (Happiness is Camping).

CBTF also offers many other exciting ongoing programs:

  • Creative Matter, a monthly virtual arts initiative spearheaded by freelance artist,  Jeremiah McCarthy and K-12 special education teacher Riley Smith – both brain tumor survivors and mentors.
  • The Family 2 Family Mentor program, connecting trained peer mentors with caregivers, survivors, siblings, and bereaved family members seeking support.
  • The Endurance Program – Every year, a team of dedicated runners from across the country race in many of the world’s most renowned marathons in support of our organization.

CBTF also offers college scholarships to survivors diagnosed before age 21 and their siblings. With support from Jenna’s Rainbow Foundation, we offer a transition grant to assist survivors in increasing their independence. We also offer the CBTF College Guide to help address common challenges related to attending college and includes a list of other scholarships.

CBTF is proud to feature the 6th edition of our resource guide, Finding Your Way, in a new readable format on our website, which is available in English and Spanish languages. Free to all families, our comprehensive resource guide addresses a variety of topics relating to the brain tumor experience.

We also have two children’s books available free to families. Parker’s BrainStorm is a child-friendly story describing the process of diagnosis and surgery from the perspective of a little bear named Parker, available in both English and Spanish. Parker’s Water Tube Ride is the second book in our Parker the Bear series, which tells the story of Parker as he is being treated for hydrocephalus and needs to undergo a shunt placement.

Our most recent publication, From Then Until Now: Stories Shared by Childhood Brain Tumor Survivors, aims to bring a voice to the life impact of childhood brain and spinal cord tumors. The stories of sixty-four individuals document their accomplishments, fears, challenges, and wisdom about life during and after a childhood brain or spinal cord tumor.

You can also check out our second cookbook – CBTF Cooks, a collection of recipes from the CBTF community.

Despite progress, 20% percent of children diagnosed with a brain tumor will not survive until their five-year mark. CBTF offers bereaved families a community to access support, connections, information, and resources. We provide a private Facebook community for bereaved families, moderated by a professional social worker and offers a safe space where families can share stories and questions, make connections, and access educational grief resources. We also offer a monthly live chat and have trained mentors available to connect with others by phone and/or email. We fund vital support to the Children’s Brain Tumor Network to find a cure. The CBTF overall goal is to support and connect families so no one ever feels alone during their brain or spinal cord tumor journey.  If you want to learn more about  CBTF and meet the CBTF families, we invite you to check out the events page on our website.

Written by Stephanie Freeman, LICSW
Children's Brain Tumor Foundation, Social Work Coordinator, New England

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