Collaborative Corner

“Reflections on CBTTC’s Founding” by Children’s Brain Tumor Foundation

Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of patient families, clinicians and researchers in “Collaborative Corner” to find cures for pediatric brain tumors.  If you would like to share your story as a guest blogger, please email


By Gary D. Jaworski, Ph.D., President, Children’s Brain Tumor FoundationCBTF

As we reflect on CBTTC’s 10th anniversary and anticipate its growing impact, it may be helpful to share the story of the Consortium’s beginning. Doing so reveals so many instructive parallels between then and now.

Like many of the blog posts already written here, the story begins with parents and families responding to personal crises of loved ones facing a brain tumor diagnosis.  When the Children’s Brain Tumor Foundation (CBTF) was founded in 1988 by parents, physicians and friends, it dedicated its efforts to improving the treatment, quality of life and the long-term outlook for children with brain and spinal cord tumors. Like other similar organizations, it formed a scientific advisory committee, headed by a leading brain tumor researcher, and sought to support cutting edge research.  Much of this support was granted to early-career researchers who applied for seed-money grants of $50,000 for their projects. This grant program was quite effective; a number of the early researchers and physicians have become leaders in the brain tumor research community today, and CBTF’s early support helped them win much bigger research grants from NIH and other funders. Over time, though, as the organization’s quality of life programming continued to expand, the CBTF board began to reevaluate its research funding priorities and looked to fund a project with larger potential impact.  The year was 2008.

On behalf of CBTF, then board member Susan L. Weiner, Ph.D. approached the head of CBTF’s Scientific Advisory Committee, Peter C. Phillips, MD, a physician at Children’s Hospital of Philadelphia, who was then as now widely known for research in neuro-oncology and the cellular mechanisms of neurotoxicity. Dr. Phillips reached out to his new colleague Tom Curran, Ph.D., FRS, who had just come from St. Jude’s Children Research Hospital, where he set up the Department of Developmental Neurobiology, to lead brain tumor translational research at CHOP.  Their offices were right next to each other. Together, Dr. Phillips and Dr. Curran created the idea of the Children’s Brain Tumor Tissue Consortium.


It was an idea ripe for creation but fraught with difficulties.  There were previous brain tumor tissue-banking repository efforts, of course. Among other limitations, these were uniformly unsystematic, non-collaborative and underfunded passive repositories.  And no brain tumor bio-repository at the time contained the critical mass of samples needed to support large-scale scientific study.  Phillips’ and Curran’s idea of a CBTTC was original and unique – nothing like it existed at the time. But to be realized it would have to overcome many hurdles. It would have to receive substantial financial support, build a collaborative network of leading institutions, and incentivize high quality work by clinicians, researchers and institutions. Only such a collaborative effort, they believed, held promise for advancing the science and treatment of brain and CNS tumors.  The hope and help that families had been seeking could finally be realized.

Well, you know much of the rest of the ten-year history. Today, the CBTTC continues to grow and flourish under the leadership of brilliant clinicians and scientists across the consortium. What you may not know is that the seed funding of this cutting edge idea — a pilot grant of $200,000 — came from the Children’s Brain Tumor Foundation, and that CBTF and its funding partner LIMA (the International Licensing Industry Merchandisers’ Association) continue to provide critical funding annually to CBTTC. CBTF is very proud to be a founder of this exceptional effort, the first of its kind, and to join with the many outstanding family foundations who see what CBTF gleaned early on – collaboration on many levels is key. With it, the Children’s Brain Tumor Tissue Consortium is transforming pediatric brain tumor research.  We look forward to the next decade ahead and are ever hopeful for the scientific discoveries and improved treatments to come.

Based on conversations with Tom Curran, Ph.D., FRS, Peter C. Phillips, MD, and Susan L. Weiner, Ph.D.


For additional information about the Children’s Brain Tumor Foundation, visit or connect on social media @CBTF on Facebook, Twitter, or on Instagram

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