Powering Data for a Cure
Dr. Sam Volchenboum, founder of the Pediatric Cancer Data Commons.
Sometimes, the most powerful breakthroughs don’t start with a microscope or a lab bench. Sometimes, they start with a bold idea and a lot of data.
In 2018, Rally Foundation took a risk on something most people would never find exciting: data.
But we saw something others didn’t.
A visionary pediatric oncologist named Dr. Sam Volchenboum at the University of Chicago who had an outside-the-box idea that could change the future of childhood cancer research.
That idea became the Pediatric Cancer Data Commons (PCDC) and Rally provided the very first seed funding to bring it to life.
Dr. Volchenboum had been studying neuroblastoma when he realized how fragmented and inaccessible data was across institutions and borders. He saw how powerful centralized, harmonized data could be. Not just for one disease, but for many.
His next target? Rhabdomyosarcoma. But he didn’t have the funding to build that new data commons until Rally stepped in with an Outside the Box Grant. That grant helped launch the INSTRuCT Sarcoma Data Commons, and we’ve continued to help fund the Data Commons expansion ever since.
What is a data commons? It’s a secure, collaborative platform where researchers can share, access and analyze enormous datasets, clinical records, imaging, outcomes, genomic data; all in one place. It breaks down silos, accelerates research and helps scientists spot life-saving patterns that could take decades to uncover alone.
Data might sound boring. But once you understand it, it becomes thrilling because within those numbers are real children, real battles and the keys to real cures.
And today, since providing seed-funding for Dr. Volchenboum to add rhabdomyosarcoma, the data commons, has grown into a global powerhouse, connecting researchers from over 40 countries and spanning a wide range of childhood cancers, including:
• Acute lymphoblastic leukemia (ALL)
• Acute myeloid leukemia (AML)
• Bone tumors (osteosarcoma and Ewing sarcoma)
• Brain and CNS tumors (e.g., medulloblastoma)
• Fanconi anemia
• Germ cell tumors
• Hodgkin lymphoma
• Liver tumors
• Nasopharyngeal carcinoma
• Neuroblastoma
• Retinoblastoma
• Rhabdomyosarcoma and other soft tissue sarcomas
• Childhood cancer predisposition syndromes
• Lynch syndrome
• Onco-fertility
From a single idea and a single grant, the PCDC now stands as one of the most innovative and far-reaching initiatives in the world of pediatric cancer research.
And here’s the heart of this story: the funding for that Outside the Box Grant didn’t come from a foundation boardroom or a corporate check. It came from a middle schooler.
Rally Kid Ruby had just finished treatment for rhabdomyosarcoma when she decided she wanted to give back. Instead of a school dance, she held the very first Ruby’s Dance Til You Drop and she raised enough to fund the grant that launched the sarcoma data commons.
A survivor helping spark a global solution.
How powerful is that?
This is the power of people.
This is the power of purpose.
This is Rally.