ALEXANDRIA, Va. — Conquer Cancer®, the ASCO Foundation, in collaboration with the Carson Leslie Foundation (CLF) #cureMEdullo, has awarded the Carson Leslie Foundation #cureMEdullo Team Science Grant in Medulloblastoma powered by EveryGrant® to a group of researchers at Sidney Kimmel Cancer Center/Johns Hopkins Medicine. The recipients will study a new approach for reducing the risk of cerebellar mutism syndrome (CMS) and neurocognitive outcomes following CMS in pediatric patients with medulloblastoma.

This one-year, $100,000 grant is designed to fund innovative clinical research and emerging treatment strategies leading to better treatments and improved outcomes for childhood medulloblastoma. About 20% of childhood brain tumors are medulloblastoma, making it the most common cancerous brain tumor in children, but it remains clinically understudied. “There is a need for innovative research and investigators to develop new treatment and care approaches for childhood medulloblastoma patients that would provide fewer long-term side effects,” said Annette Leslie, co-founder and chief mission officer of CLF. 

Sahaja Acharya, MD, is the study’s lead principal investigator, and Junghoon Lee, PhD, Rachel Peterson, PhD, and Ryan Oglesby, PhD are co-investigators. Other research team members include Chathurangi Pathiravasan, PhD, Sue Mead (patient advocate) and Catherine Northup (child life specialist). Additional collaborators include Kenichi Oishi, PhD; Karin Walsh, PhD; and Kenneth Cohen, MD, MBA.

Dr. Acharya is the Director of the Pediatric Radiation Oncology program at the Johns Hopkins Hospital. She specializes in pediatric brain tumors with a focus on medulloblastoma. Her research program develops novel strategies to reduce late effects, particularly neurocognitive impairment, in children diagnosed with medulloblastoma. She leads multiple clinical trials for children with brain tumors and her team collaborates across several disciplines including neuropsychology, computational neuroanatomy and computer science. 

More than 25% of children with medulloblastoma develop CMS, also known as posterior fossa syndrome, which is characterized by delayed onset mutism/reduced speech and emotional liability, but can also include weakness and difficulty swallowing. These symptoms appear days after surgery and can improve in the weeks to months following surgery; however, many patients endure long-term permanent neurological and neurocognitive deficits, which affect intellectual function and independence, reducing their quality of life. There is no treatment for CMS and severe CMS can lead to prolonged hospitalization, which can delay post-operative radiation. Management is limited, consisting of in-patient rehabilitation after surgery. Although CMS can occur after surgery for any tumor in the fourth ventricle or cerebellum, it is most common in patients with medulloblastoma. Furthermore, although survival rates for medulloblastoma have improved, the incidence of CMS remains unchanged, highlighting the pressing need to address a problem that affects many patients and their families early in the medulloblastoma treatment course with long-term implications. 

The grant will fund research designed to develop a new paradigm to accurately predict risk for CMS and to identify and validate an early imaging biomarker for long-term neurocognitive impairment. The research will be conducted as a bi-institutional collaboration with Children’s National Hospital and Johns Hopkins Children’s Center. “The goal of our work is to empower patients and their families to make well-informed decisions with respect to length and intensity of cognitive rehabilitation early in the treatment course, thereby improving the patient's quality of life and independence,” Dr. Acharya said.

This is a grant from Carson Leslie Foundation #cureMEdullo, with Conquer Cancer serving as the lead organization in implementing and administering the grant through its EveryGrant program. “In 2019, we supported an early-career researcher through a Conquer Cancer Young Investigator Award in Medulloblastoma Research. This team science grant through the collaboration between CLF #cureMEdullo and Conquer Cancer represents our synergistic commitment to advancing research in medulloblastoma and ensuring a cadre of investigators focused on this important area. Based on my decades of working with leading cancer organizations, leveraging Conquer Cancer’s infrastructure makes the most sense and amplifies our reach and impact,” said Gerald J. McDougall, a Conquer Cancer board member and the Chairman of the Carson Leslie Foundation board.

Since inception in 2010, the Carson Leslie Foundation #cureMEdullo’s singular focus has been to accelerate the most promising science and therapeutic advances in our pursuit of cures for children with medulloblastoma.

Learn more about Conquer Cancer's EveryGrant program.