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Working with the neuro-oncology team at St. Louis Children’s, Colin’s elementary and middle schools created altered educational plans for him. The goal ever since has been to help him keep pace without exhausting him. “Fortunately for us, both his schools have been amazing in providing us with resources for tutoring and in the level of support and caring they demonstrate,” says Becky. As Colin’s team of educators continue that support, Dr. Rubin and his colleagues have been collecting data generated by neuro-psychiatric testing, as well as functional and anatomical magnetic resonance imaging (MRI), of the brain tumor patients enrolled in their study. So far, they have exceeded the study’s initial enrollment goals. “We are hoping to gather enough data to apply for an NIH grant to really dig into this emerging issue,” Dr. Rubin says. “For now, we hope we can prove

“Until we understand how tumors derail the structural and functional factors of brain development, it will be difficult for us to optimize cognitive recovery.” Josh Rubin, MD, PhD

the feasibility of being able to do something with that data. Then, we hope to look for consistent patterns in the tumors of these patients. We also want to be able to identify the differences between brain tumor patients and a [healthy] control group. Eventually, we believe we will be able to give families an informed prediction on the cognitive outcome of various forms of treatment and adjust that child’s treatment accordingly. That would

be a truly transformative personalized medicine approach.” Meanwhile, Becky and her husband, Rick, will continue to do all they can to help Colin reach his full potential in school, on the ice and in life. “We are working very hard to get our Colin back,” says Becky. “We don’t need a rock star or a star athlete. We just want what he wants, and that’s to be in the game.”


Pediatric Cancer Cisplatin, a widely used and effective chemotherapy

Through advances in sequencing

drug, often causes hearing loss and nerve damage

technology, researchers are

in children who receive treatment. Mark Warchol,

discovering new gene variants

PhD, otolaryngology, and Lavinia Sheets, PhD,

in cancer cells all the time. The

otolaryngology, designed a study that addresses

ongoing challenge is that they

these issues. With their CDI funding, they hope

still don’t have a way to determine

to determine whether adjusting the treatment

their impact. Dustin Baldridge,

schedule based on a child’s biological rhythm, or

MD, PhD, pediatrics, Barak

Not pictured: Josh Rubin, MD, PhD

circadian clock, influences

Cohen, PhD, genetics, Josh Rubin, MD, PhD,

the vulnerability of sensory

pediatrics, Christina Gurnett, MD, PhD, neurology,

cells to the drug. They

Malachi Griffin, PhD, medicine, and Obi Griffin,

also will test to see if any

PhD, medicine, received CDI funding to perform

FDA-approved drugs and

the type of DNA scanning needed to make those

bioactive compounds could

determinations for two important cancer genes:

be used to prevent or reverse

TP53 and SMAD4. Their studies will be useful for

the nerve damage.

clinicians who treat cancer and promise to identify personalized therapies. 7

Children's Discovery Institute: 2018 Report to Investors  
Children's Discovery Institute: 2018 Report to Investors