named programs · 3 · from sources
What they call their work
Bereaved Family Mentor Program
Trained mentors with lived experience provide one-on-one support to families navigating grief after the loss of a child to a brain tumor.
Bereaved Parent DIPG/DMG Group
Specialized support group in collaboration with the Marc Jr. Foundation for parents and caregivers who lost a child to DIPG or DMG.
Bereaved Parent Group
Private Facebook community offering peer support, grief resources, and connection opportunities for parents who have lost a child to a brain tumor.
activities · 10 groups
What they do
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Peer-Led Mental Health Support Groups 2 activities
- Hosting regional and local in-person support groups and community eventsProvides monthly and quarterly in-person support groups for caregivers, survivors, siblings, and fathers across multiple regions including NYC, Boston, Minneapolis, and Washington D.C., along with recreational and educational community events such as Red Sox games, ice cream socials, cooking workshops, and art programs.
- Providing virtual support and online programming for brain tumor survivors and familiesOffers virtual support groups for parents of children with DIPG/DMG, hosts weekly peer-led online chats for young adult survivors, runs a monthly online art program with mailed art kits, and facilitates a Read to Dogs Program that pairs young survivors and siblings with therapy dogs via virtual sessions to build reading confidence.
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Children's Book Distribution Programs 1 activity
- Delivering educational resources and child-friendly materials for familiesDistributes free, age-appropriate educational books including Parker’s Brain Storm, Parker’s Water Tube Ride, and Parker’s Friendship Circle to help children understand diagnosis, treatment, and social reintegration, and provides free access to the comprehensive resource guide Finding Your Way (7th edition) for families affected by pediatric brain or spinal cord tumors.
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Cancer Research Funding 1 activity
- Funding infrastructure for collaborative pediatric brain tumor research networksFinances infrastructure and operational costs for national research consortia including the Children’s Brain Tumor Network (CBTN) and the Children’s Brain Tumor Tissue Consortium (CBTTC), with grants totaling hundreds of thousands of dollars awarded to strengthen data sharing, tissue banking, and institutional participation in collaborative research efforts.
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Genetic and Neurological Disease Research Funding 1 activity
- Funding pediatric brain and spinal cord tumor researchProvides grants to support scientific research aimed at finding cures and improving treatments for pediatric brain and spinal cord tumors, including funding for genomic studies, proteogenomic identification of neoantigens, and single-cell DNA sequencing in childhood medulloblastoma. Awards multi-year operational and infrastructure grants to institutions such as Children’s Hospital of Philadelphia, Boston Children’s Hospital, and Seattle Children’s Hospital.
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Granting Wishes to Seriously Ill Children 1 activity
- Funding quality of life programs for pediatric brain tumor patients and survivorsAwards Quality of Life Grants totaling $25,000 annually to support clinical interventions and staff education programs that improve care and well-being for children with brain tumors and their families.
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Grief Support Groups and Counseling 1 activity
- Offering dedicated bereavement support for families who have lost a child to a brain tumorProvides a comprehensive bereavement program for parents, caregivers, and siblings who have lost a child to a brain tumor, including private Facebook communities, one-on-one social worker support, mentor programs pairing bereaved families with trained peers, and face-to-face events such as lunches and mentor trainings.
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Cancer Peer Support & Wellness Programs 1 activity
- Operating peer mentor and peer-led support programs for survivors and familiesRuns a peer mentor program connecting trained mentors with caregivers, survivors, and bereaved family members; operates peer-led online chats and programs such as Stepping Forward and Find Your Fit for young adult and adult survivors; and supports young adult leadership in program delivery.
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Recreational and Emotional Support Programs for Children with Serious Illnesses 1 activity
- Organizing retreats and confidence-building conferences for pediatric brain tumor survivorsHosts regional Heads Up Conferences that provide peer connection and confidence-building opportunities for pediatric brain and spinal cord tumor survivors, and operates a retreat program for survivors aged 5+ and their fathers featuring recreational activities like rock climbing, zip-lining, and campfires to foster bonding and healing.
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Direct Mental Health Counseling and Support Services 1 activity
- Providing continuous psychosocial and emotional support throughout the pediatric brain tumor journeyOffers one-on-one phone support via social workers for families from diagnosis through treatment, survivorship, and bereavement, including specialized support for newly diagnosed families, those transitioning post-treatment, and those managing long-term effects.
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Youth Leadership Development Programs 1 activity
- Supporting teen and young adult survivors through leadership and social development programsRuns a Teen Leadership Program for survivors aged 15–19 to build peer networks and engage in mentorship, hosts Teen Survivor Chat for ages 13–18, and offers ongoing opportunities for young adult survivors to serve in leadership roles at conferences and events based on their strengths and skills.
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financials · form 990 · fy2024
revenue
Total revenue$1.42M
Contributions & grants$1.36M96%
Program service revenue$00%
Investment income$45K3%
Other revenue$13K
expenses
Total expenses$1.52M
Program expenses65%
Admin / overhead8%
Fundraising26%
Salaries & benefits$727K
Grants paid out$100K
Largest expense lineCompensation
balance sheet
Total assets$1.28M
Cash$1.21M
Investments$0
Liabilities$41K
Net assets$1.24M
Liquid reserves9.6 mo
4 years on record · 2020–2024 · YoY revenue -4.4%
leadership · form 990 part vii · fy2024
Who runs it
board members · 11
- BILLY GOLDSTEIN — VICE PRESIDE
- CHRISTOPHER COUTTS — DIRECTOR
- ERIC SNYDER — VICE CHAIR
- ERIK COLEMAN — DIRECTOR
- GARY BREWSTER — TREASURER
- GINNY SHULMAN — DIRECTOR
- LINDA WACHTEL — DIRECTOR
- LIONEL LEVENTHAL — BOARD CHAIR
- MIRIAM BARRY — SECRETARY
- ROBERT LOBER — DIRECTOR
- YURI KRUPP — DIRECTOR
relationships · 61
Who they work with
- Advocate Health and Hospitals Corporation Partner — Receives funding from CBTF to develop and implement a staff education program for Pediatric Oncology Survivorship in Transition (POST).
- Agency of Record Partner — Handles branding, website, campaigns, and collateral for the Children's Brain Tumor Foundation
- Aon Foundation Partner — Corporate sponsor supporting the foundation's programs.
- Blank Rome LLP Partner — Corporate sponsor supporting the foundation's programs.
- Brodsky Family Partner — Corporate sponsor supporting the foundation's programs.
- Canon Solutions America, Inc. Partner — Corporate sponsor supporting the foundation's programs.
- Carylon, Julius and Marcie Hemmelstein Foundation Partner — Corporate sponsor supporting the foundation's programs.
- Children’s Brain Tumor Network Network — Founded and supported by CBTF to strengthen infrastructure and collaboration in pediatric brain tumor research.
- Children’s Hospital of Minnesota Partner — Collaborates with CBTF to offer monthly support groups for caregivers and survivors in the Minneapolis, MN area.
- Children’s Hospital of Philadelphia Partner — Receives multi-year funding from CBTF for operational expenses of the Children’s Brain Tumor Tissue Consortium (CBTTC) and related research infrastructure.
- Children’s National Hospital Partner — Receives funding from CBTF for participation in the Children’s Brain Tumor Network and proteogenomic research on ependymoma.
- Christies International Real Estate Partner — Corporate sponsor supporting the foundation's programs.
- Christopher and Cheryl Coutts Partner — Corporate sponsor supporting the foundation's programs.
- Chubb Insurance Partner — Corporate sponsor supporting the foundation's programs.
- Day One Partner — Supported the creation of the 7th edition of the Finding Your Way resource guide.
- Day One Biopharmaceuticals Partner — Corporate sponsor supporting the foundation's programs.
- Deerfield Partnership Foundation Partner — Corporate sponsor supporting the foundation's programs.
- Deloitte Services Partner — Corporate sponsor supporting the foundation's programs.
- Eric and Dianna Snyder Partner — Corporate sponsor supporting the foundation's programs.
- Essig Enright Family Foundation Partner — Corporate sponsor supporting the foundation's programs.
- FTI Consulting Partner — Corporate sponsor supporting the foundation's programs.
- Fabricant & Fabricant Partner — Corporate sponsor supporting the foundation's programs.
- Goldman Sachs & Co Partner — Corporate sponsor supporting the foundation's programs.
- Hubbard Family Charitable Trust Partner — Corporate sponsor supporting the foundation's programs.
- International Licensing Industry Merchandisers’ Association Funder — Supported CBTF’s Tumor Tissue Consortium Planning Grant through financial contribution.
- JP Morgan Chase & Co. Partner — Corporate sponsor supporting the foundation's programs.
- Jenna's Rainbow Foundation Funder — Provides funding for Jenna's Friendship Circle program.
- Jenna’s Rainbow Foundation Funder — Provides funding for the Creative Matter program.
- Jenna’s Rainbow Foundation Partner — Corporate sponsor supporting the foundation's programs.
- John & Anita Mitchell Family Fund Partner — Corporate sponsor supporting the foundation's programs.
+ 31 more
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Art-Based Emotional Therapeuticsmethodology: art_based_therapyBy using art as a therapeutic tool that emphasizes creative desire over skill, the organization supports emotional well-being and reduces isolation during hospitalization and recovery because nonverbal expression enables processing of trauma and fosters inclusion.
- Collaborative Research Infrastructuremethodology: tissue_biobanking_networkBy building a multi-institution tissue biobanking network that standardizes and publicly shares pediatric brain tumor samples and clinical data, the organization accelerates research because open-access collaboration removes silos and enables broader scientific inquiry.
- Developmentally Appropriate Educationmethodology: child_friendly_communicationBy using plain language and child-friendly storytelling with anthropomorphic characters, the organization helps children and families understand complex medical information because age-tailored communication increases comprehension, reduces fear, and supports engagement in care.
- Integrated Care Modelmethodology: integrated_care_modelBy integrating research, family support, education, and advocacy as interconnected pillars, the organization improves outcomes for pediatric brain tumor patients because coordinated access across these domains addresses both medical and psychosocial needs simultaneously.
- Peer-Led Support and Mentorshipmethodology: peer_led_supportBy connecting survivors, families, and grieving individuals with peers who have shared lived experiences—through mentorship, retreats, mail correspondence, or virtual groups—the organization fosters deeper emotional connection and reduces isolation because authentic understanding grows from shared experience.