It's one of the cruelest ironies in health and medicine. Pediatric sarcomas are some of the rarest yet most aggressive forms of childhood cancer, and some of the hardest to cure. Whereas many adult cancers are now treatable with new therapeutic strategies, such as immunotherapies, pediatric sarcomas have not seen nearly as many advances. Survival rates have remained largely unchanged for decades.
In 2014, a coalition of advocacy groups founded by parents from across Long Island, New York, who'd lost children to rhabdomyosarcoma (RMS) banded together to support a new research initiative aimed at better understanding this deadly disease so that one day a cure could be found. The group met at Cold Spring Harbor Laboratory's Banbury Center . This world-renowned think tank was built for bringing together scientists, clinicians, and patient advocates to launch initiatives like this one, focused on a particular area of research or public health.
Since that fateful first meeting, scientists have made incredible progress, not only in RMS but also in other sarcomas and childhood diseases. Likewise, what began as a small but dedicated coalition of RMS groups has grown into a full-fledged pediatric sarcoma movement. After more than a decade of progress, the movement returned to Banbury Center.
In 2025, the think tank hosted Pediatric Sarcomas: Targets for Therapeutic Development . The meeting was organized by CSHL Adjunct Professor Christopher Vakoc , now with St. Jude Children's Research Hospital, and Kimberly Stegmaier , chair of the Department of Pediatric Oncology at the Dana-Farber Cancer Institute.
"It was an intense and inspiring three days," recalls Phil Renna, founder of the Christina Renna Foundation , one of the advocacy groups that supported both Banbury meetings. "So many ideas were proposed and discussed. Most importantly, we came away with a roadmap to help bring today's cutting-edge research from bench to bedside."
That roadmap recently appeared in an article in Genes & Development , published by CSHL Press . In the article, meeting attendees called for more collaboration in the spirit of the Banbury sessions. The authors wrote that for today's pediatric cancer discoveries to eventually benefit patients, it would be crucial to "foster interdisciplinary partnerships among medical chemists, scientists, clinicians, advocates, and industry partners."
After outlining obstacles to progress, the group laid out three top priorities for the future: 1) creating an open-access platform for data and model sharing, 2) bridging pediatric and adult oncology through unified clinical infrastructure, and 3) fostering multidisciplinary collaboration.
"Together, these priorities underscore the need for a more interconnected research ecosystem that matches the complexity of the disease itself," the authors wrote. "As emerging tools continue to reveal new vulnerabilities in pediatric sarcomas, the challenge ahead lies in translating this knowledge into durable therapies, guided by collaboration, shared infrastructure, and a sustained commitment to bridging discovery and treatment."
