Raymond A. Wood Foundation Joins the Children’s Brain Tumor Network Executive Council

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The Children’s Brain Tumor Network (CBTN) is dedicated to driving innovative discovery, pioneering new treatments and accelerating open science to improve health for all children and young adults diagnosed with a brain tumor. The CBTN is the largest pediatric brain tumor biorepository and is made up of over 40 partner foundations. This month, Raymond A. Wood Foundation (RAWF)  joined those partner organizations and has pledged $50,000 in support of the growth of CBTN’s craniopharyngioma biobank to accelerate research on tumor treatment and post-treatment management.

“I first learned of CBTN’s work about a year after my son, Alex, was diagnosed and was immediately interested in having his tumor tissue data submitted,” said Amy Wood, executive director of RAWF. “The foundation  has been collaborating over the last year on the CBTN/PNOC craniopharyngioma working group and the next logical step was to commit to contributing to the growth of this biobank. We are excited about working with the dedicated group of brain tumor researchers and foundations and the future for research opportunities for craniopharyngioma.”

According to CBTN, samples collected from CBTN member institutions are processed and carefully stored in the CBTN’s operations center located at Children’s Hospital of Philadelphia. These preserved specimens may then be requested by researchers and investigators who can use the samples to learn more about each of the more than 100 unique childhood brain tumor histologies. Each collected sample is paired with different types of data including clinical data from patient visits, imaging data from MRI scans, histology data from stained slides of tissue, genomic data extracted from whole genome sequencing (WGS) with paired RNAseq data and proteomic data that reveals the properties of a patient’s proteins. These data sets are reviewed for accuracy and any identifying information is removed from the data to protect the privacy of each and every research subject. Cloud-based data platforms allow researchers to access these rich collections of brain tumor data from anywhere in the world. 

Link: Find out more about CBTN

RAWF will work with the craniopharyngioma patient community to increase awareness of the CBTN biobank in an effort to increase collection of craniopharyngioma data which can result in an increase in research opportunities.

“We’re delighted to have Raymond A. Wood Foundation join the CBTN Executive Council. They bring a unique and important perspective on the pediatric brain tumor landscape through their depth of understanding and advocacy around craniopharyngioma,” states Jena Lilly, Executive Director of CBTN. “The Executive Council serves a crucial role in ensuring that CBTN efforts are sustainable and that patients and their families remain at the center of all that we do. We’re looking forward to working closely with Amy Wood and her team at the Raymond A. Wood Foundation to continue to not only advance but to accelerate discoveries through collaborative research.”

Funding to support CBTN comes from the Roar for Rare campaign launched last fall. To support the growth of this biobank and other research programs, make a gift today.

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