The Jonah Finn Foundation:

Empowering Communities

Pediatric Central Nervous System or ETMR Clinical Trials

(Recruiting or Active)

ETMR One: An International Registry and Research Platform for Children With Embryonal Tumor With Multilayer Rosettes

SJDAWN: St. Jude Children's Research Hospital Phase 1 Study Evaluating Molecularly-Driven Doublet Therapies for Children and Young Adults With Recurrent Brain Tumors

Sirolimus in Combination With Metronomic Chemotherapy in Children With Recurrent and/or Refractory Solid and CNS Tumors (AflacST1502)

Study of B7-H3, EGFR806, HER2, And IL13-Zetakine (Quad) CAR T Cell Locoregional Immunotherapy For Pediatric Diffuse Intrinsic Pontine Glioma, Diffuse Midline Glioma, And Recurrent Or Refractory Central Nervous System Tumors

Study of B7-H3-Specific CAR T Cell Locoregional Immunotherapy for Diffuse Intrinsic Pontine Glioma/Diffuse Midline Glioma and Recurrent or Refractory Pediatric Central Nervous System Tumors

Study Of Palbociclib Combined With Chemotherapy In Pediatric Patients With Recurrent/Refractory Solid Tumors

HER2-specific CAR T Cell Locoregional Immunotherapy for HER2-positive Recurrent/Refractory Pediatric CNS Tumors

hemo-immunotherapy Using Ibrutinib Plus Indoximod for Patients With Pediatric Brain Cancer

Targeting Pediatric Brain Tumors With Sodium Glucose Cotransporter 2 Inhibitors (SGLT2i)

Magrolimab in Children and Adults With Recurrent or Progressive Malignant Brain Tumors (PNOC025)

Study of the Bromodomain (BRD) and Extra-Terminal Domain (BET) Inhibitors BMS-986158 and BMS-986378 in Pediatric Cancer

Precision Medicine for Every Child With Cancer (ZERO2)

Ex Vivo Drug Sensitivity Testing and Multi-Omics Profiling

Pediatric Prospective Personalized Immune and Target Identification Trial (PPROSPERITIT)

Recent Literature

For more information on ETMR and other rare pediatric brain cancers, you can download and read the following publications.

Molecular Classification and Management of RarePediatric Embryonal Brain Tumors

Embryonal Tumors of the Central Nervous System in Children: The Era of Targeted Therapeutics

The challenges in treating embryonal tumors with multilayered rosettes (ETMR) and other infant brain tumors.

Embryonal Tumors of the Central Nervous System in Children: The Era of Targeted Therapeutics

Embryonal tumor with multilayered rosettes: Overview of diagnosis and therapy

Evaluating preclinical evidence for clinical translation in childhood brain tumours: Guidelines from the CONNECT, PNOC, and ITCC brain networks

Rare embryonal and sarcomatous central nervous system tumours: State-of-the art and future directions

Accurate diagnosis of pediatric brain cancers

Rare pediatric brain tumors

Family Resources

Financial

A. One Mission https://onemission.org/how-we-help/financial-relief-programs/

B. Family Reach https://familyreach.org/gethelp/

C. Financial Assistance Grants - Joe Andruzzi Foundation https://joeandruzzifoundation.org/how-we-help/financial-assistance-program/

D. Education - Triage Cancer https://triagecancer.org/

Palliative Care

A. Courageous Parents Network https://api.courageousparentsnetwork.org/app/uploads/2021/10/CPN-Introduction-to-Pediatric-Palliative-Care_R2.pdf

Psychosocial Support

A. CAC2 (Hope Portal)

https://cac2.org/impact-areas/family-support/hope-portal/

B. ETMR Warriors

https://www.facebook.com/groups/2173773389571802