Blogs: Families, Foundations & Researchers

I Will Miss Him Big Much

by Cindy Campbell | Jul 7, 2020

I took my toddler to the emergency department after a sleepless night, insisting that perhaps he was suffering headaches. Wearing a bright yellow t-shirt that matched his curly blonde hair, cargo shorts and flip flops, Ty jumped and giggled his way into the sunny room at the local children’s hospital.

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Beth Frenkel Tissue Navigator

by Beth Frenkel | May 20, 2020

I am the tissue navigator for Gift from a Child (GFAC) program at Children’s Hospital of Philadelphia. I began my professional career as a licensed funeral director and then transitioned into being an advocate for organ and tissue donation for transplant as a liaison for medical examiners, coroners and funeral professionals for the Gift of Life Donor Program.

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Light That Seeps Through a Broken Heart

by Ginny McLean | Apr 28, 2020

Stories of Strength and Inspiration. They astounded me with their strength. The strength to rise above their grief and take action. Their unselfish desire to make it better for the next family and work towards the goal of there never being a next family.

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I Love You Always, Mom

by Gloria Martin | Aug 13, 2019

I Love You Always, Mom Dear Silas, I want you to know your very last wish is happening right now. There is a team of researchers, doctors, and specialists who...

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Except for Tissue

by Nikki Lyons | Aug 8, 2019

My Research Project Was Scrapped Due to Lack of Tissue I always knew I wanted to be a scientist. This meant that when I was younger, I loved watching movies...

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What Cancer Taught Me

by Luke Reynolds | Jul 24, 2019

What Cancer Taught Me   Luke Reynolds won 1st Place in the2019 Ben Strauss Youth ProgramMiddle SchoolTeen Essay ContestThis is his winning essay What...

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Recent Publications from Centers of Excellence

Harmonization of Post-mortem Donations for Pediatric Brain Tumors and Molecular Characterization of Difuse Midline Gliomas

Children diagnosed with brain tumors have the lowest overall survival of all pediatric cancers.  To address the paucity of tissue for biological studies, we have established a comprehensive protocol for the coordination and processing of donated specimens at postmortem. Since 2010, 60 postmortem pediatric brain tumor donations from 26 institutions were coordinated and collected. Patient derived xenograft models and cell cultures were successfully created (76% and 44% of attempts respectively), irrespective of postmortem processing time. Histological analysis of mid-sagittal whole brain sections revealed evidence of treatment response, immune cell infiltration and the migratory path of infiltrating H3K27M DMG cells into other midline structures and cerebral lobes. Sequencing of primary and disseminated tumors confirmed the presence of oncogenic driver mutations and their obligate partners. Our findings highlight the importance of postmortem tissue donations as an invaluable resource to accelerate research, potentially leading to improved outcomes for children with aggressive brain tumors. Read Full Publication

Dr. Monje-Deisseroth and her team at Stanford University recently published a paper detailing how gliomas are able to “hijack” the brain's communication system.

Published in  Nature: High-grade gliomas are lethal brain cancers whose progression is robustly regulated by neuronal activity. Activity-regulated release of growth factors promotes glioma growth, but this alone is insufficient to explain the effect that neuronal activity exerts on glioma progression. Here we show that neuron and glioma interactions include electrochemical communication through bona fide AMPA receptor-dependent neuron–glioma synapses. Read More

Congratulations to two of our Center of Excellence teams lead by Dr Javad Nazarian and Dr. Michelle Monje on their recent groundbreaking research publication. Due in part to increased access to post-mortem tissuethe teams were able to study a larger sample of DIPG tumors.  Diffuse intrinsic pontine glioma is a lethal pediatric brain cancer characterized by H3K27M histone mutation. Nagaraja et al. characterize a large cohort of rare primary tumors and normal pontine tissue to reveal active regulatory element heterogeneity dependent upon the histone variant and cell context in which the mutation occurs. Read More

Research Breakthroughs Resulting from Autopsy Tissue

Why Autopsy Tissue is Needed to Empower Research

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