named programs · 6 · from sources
What they call their work
Advanced Resistance Mapping and Overcoming Relapse of ETMR (ARMOR)
Preclinical research mapping tumor microenvironment interactions in ETMR to identify new therapeutic targets
ETMR One Global Clinical Trial
Phase 2 international clinical trial for newly diagnosed ETMR, led by PNOC consortium with foundational support from SKC
Feasibility of Guided Therapy Using Organotypic Slice Culture
Preclinical study testing personalized drug screening on tumor biopsies to guide therapy for children with relapsed brain tumors
Preclinical testing of anti-GPC2 CAR T cells
Testing of GPC2-targeted CAR T-cell therapy in preclinical models of ETMR and medulloblastoma
Targeting CDK7 for ATRT Therapy
Preclinical study testing CDK7 inhibitors as a targeted treatment for atypical teratoid/rhabdoid tumors (ATRT) in children
Transatlantic Integration Targeting ALK in Neuroblastoma (TITAN)
Phase 3 clinical trial evaluating Lorlatinib in newly diagnosed neuroblastoma with ALK mutations, representing first transatlantic COG-SIOPEN collaboration
activities · 4 groups
What they do
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Cancer Awareness and Education Initiatives 3 activities
- Advocating for pediatric cancer research and policy changeAdvocates for increased research funding, expanded access to clinical trials, and improved drug development policies for pediatric cancers at national and international levels. Participates in key committees including NANT, ACCELERATE, Cancer Grand Challenges, DOD Rare Cancer Research Program, and NCI Pediatric Steering Committee.
- Organizing awareness and education events for pediatric cancerHosts annual events including "Lace Up for Kids" during Childhood Cancer Awareness Month and the virtual Neuroblastoma Parent Global Symposium since 2020 to raise awareness, share knowledge, and support families affected by pediatric cancer.
- Providing direct support and educational resources to families and advocatesOffers a glossary of clinical trial terms, a library of expert presentations on neuroblastoma, and informational support via email to help families and advocates navigate pediatric cancer clinical trials. Produces the "This Week in Pediatric Oncology" podcast to inform and support affected families.
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Medical Research Funding 1 activity
- Building research capacity through expert collaborationProvides hands-on support to researchers throughout the lifecycle of funded projects and convenes international scientific experts to develop consensus protocols, such as the first ETMR clinical trial protocol established in 2018–2019.
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Cancer Research Funding 1 activity
- Funding innovative pediatric cancer research and clinical trialsFunds cutting-edge preclinical research and early-phase clinical trials for children with poor-prognosis cancers, supporting projects across 250 institutions in 15 countries. The organization strategically invests in breakthrough treatment options including immunotherapy, cancer vaccines, and new drugs.
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Uncategorized 1 activity
- Conducting and contributing to pediatric cancer researchConducts systematic literature reviews and contributes to published research on ethical, legal, and social aspects of pediatric cancer trials. Co-authors publications on clinical trial design and patient perspectives, and authors textbook chapters on family-centered oncology care.
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financials · form 990 · fy2024
revenue
Total revenue$333K
Contributions & grants$274K82%
Program service revenue$00%
Investment income$71K21%
Other revenue$-11K
expenses
Total expenses$649K
Program expenses40%
Admin / overhead22%
Fundraising37%
Salaries & benefits$353K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$1.76M
Cash$1.62M
Investments$0
Liabilities$142K
Net assets$1.61M
Liquid reserves29.9 mo
4 years on record · 2020–2024 · YoY revenue -48.0%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| SCOTT KENNEDY | FORMER EXEC | 40 | $157K |
board members · 11
- CATHERINE MURCHIE — CO-SECRETARY
- CHANNING STAVE — CO-CHAIR
- DIALA TABET — DIRECTOR
- EYAL SOFFER — TREASURER
- HEARN JAY CHO — DIRECTOR
- JOHN LONDON — DIRECTOR
- KHALIL BARRAGE — DIRECTOR
- LINDY GAD — DIRECTOR
- MARK SAVOYE — CO-CHAIR
- MICHAEL NIEDZIELSKI — DIRECTOR
- MICHELE ALEXANDER — CO-SECRETARY
relationships · 38
Who they work with
- ACCELERATE Partner — Collaborates with ACCELERATE on pediatric strategy forums for medicinal product development in pediatric cancers.
- ACCELERATE Partner — Engaged in multiple ACCELERATE initiatives including the Steering Committee, Working Groups, and Strategy Forums.
- American Association for Cancer Research (AACR) Partner — Participates in AACR working groups, panels, and workshops including the Pediatric Cancer Working Group and June Biedler Prize judging.
- Band of Parents Partner — Collaborates on the International Integrated Analysis to Identify Markers of Poor Survival in High-Risk Neuroblastoma.
- Bibi Fund Partner — Collaborates with Solving Kids' Cancer on multiple funded research projects, including the ETMR One Global Clinical Trial and preclinical studies on ATRT and neuroblastoma.
- Cancer Grand Challenges, Team KOODAC Partner — Participates in the Team KOODAC Patient Advocate Committee to advance research on childhood cancers.
- CarEasy Partner — Partnership to facilitate vehicle donations for Solving Kids' Cancer.
- Children's Neuroblastoma Cancer Foundation Partner — Supports the "Solving Indolent Neuroblastoma" preclinical research project with Solving Kids' Cancer.
- Children’s Hospital of Philadelphia Partner — Collaborated with Dr. Garrett Brodeur from CHOP to discuss genetic predisposition in childhood cancer on the podcast.
- Department of Defense Government — Serves on the Rare Cancer Research Programmatic Panel.
- European Medicines Agency Partner — Participates in collaborative pediatric strategy forums with the European Medicines Agency.
- FDA Government — Participates as Patient Representative and Panel Member in FDA advisory committees including ODAC and OCE forums.
- Fishin' For the Cure Partner — Supports preclinical development of GPC2-directed immunotherapies for pediatric cancers.
- Food and Drug Administration Government — Engages with the FDA in pediatric strategy forums for cancer drug development.
- Gold Ribbon Kids Cancer Foundation Partner — Partner in the ARMOR study investigating relapse mechanisms in ETMR.
- Hope4ATRT Foundation Partner — Supports joint research initiatives with Solving Kids' Cancer focused on atypical teratoid/rhabdoid tumors (ATRT).
- Joining Against Cancer in Kids (JACK) Partner — Collaborates on the TITAN trial to advance frontline treatment for neuroblastoma.
- Lurie Children's Hospital of Chicago Partner — Partnered through Dr. Angela Waanders' involvement in the "Gift from a Child" program to advance pediatric cancer research via tissue donation advocacy.
- National Cancer Institute Government — Member of the NCI Pediatric and Adolescent Solid Tumor Steering Committee and Pediatric Central Review Board.
- National Institutes of Health Network — Directs families to clinicaltrials.gov, a database maintained by the National Institutes of Health, to find pediatric cancer clinical trials.
- New Approaches to Neuroblastoma Therapy (NANT) Partner — Collaborates through membership in the NANT Executive Committee and Parent Advisory Council.
- PEEL Therapeutics, Inc. Partner — Engaged with Dr. Joshua Schiffman, CEO of PEEL Therapeutics, to discuss nanotechnology applications in pediatric cancer treatment.
- Pierce Phillips Charity Partner — Partner in funding GPC2-directed immunotherapy research for pediatric solid tumors.
- Princess Nora's Warrior Foundation Partner — Co-funder of multiple SKC-supported projects, including a Phase 2 ETMR clinical trial and preclinical testing of anti-GPC2 CAR T cells.
- Ronan Thompson Foundation Partner — Supports both the TITAN clinical trial and GPC2-directed immunotherapy research for neuroblastoma.
- SIOPEN Partner — Attends SIOPEN Annual General Meetings and contributes to international neuroblastoma research dialogue.
- Solving Kids' Cancer UK Partner — Collaborates as a parent-led charity focused on neuroblastoma, sharing a vision of a future where no child dies from the disease or suffers due to treatment.
- Solving Kids' Cancer-UK Network — Member of the collaborative network supporting the TITAN clinical trial.
- The Catherine Elizabeth Blair Memorial Foundation Partner — Funds research into GPC2-directed immunotherapies for neuroblastoma alongside Solving Kids' Cancer.
- The Jonah Finn Foundation Partner — Collaborates on preclinical research to map resistance mechanisms in embryonal tumor with multilayered rosettes (ETMR).
+ 8 more
strategies · 3
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.
- Cure-Focused Research Funding with Competitive Selectionmethodology: cure-focused_research_fundingBy using a competitive funding model that prioritizes high-impact, innovative research projects, the organization increases the likelihood of delivering cures for childhood cancers, because this approach directs resources to the most promising scientific opportunities.
- Global Multistakeholder Collaboration to Accelerate Treatment Developmentmethodology: multistakeholder_collaborationBy convening and partnering with global stakeholders—including researchers, clinicians, regulators, and industry—the organization accelerates pediatric cancer advances, because coordinated action across sectors overcomes fragmentation and drives consensus on research and treatment priorities.
- Patient-Centered Motivation Driving Advocacy and Research Prioritiesmethodology: patient-centered_motivationBy centering the lived experience of children and families—particularly the desire to prevent future suffering—the organization shapes its advocacy and research agenda, because patient-driven motivation ensures relevance, urgency, and ethical alignment in the pursuit of cures.