Alex’s Lemonade Stand Foundation gets $100K to ease access to childhood cancer data

Alex’s Lemonade Stand Foundation (ALSF), a nonprofit working to raise funds for pediatric cancer research, received a $100,000 donation from the Hayman Foundation to back the work of its Childhood Cancer Data Lab (CCDL).

First created in 2017, the lab’s goal is to ease access to publicly available data on pediatric cancer. Through a free online tool called refine.bio, the organization puts data from sources like the National Institutes of Health into a single format, which helps researchers efficiently analyze it in the hopes of identifying patterns.

“The data refinery, refine.bio, is now processing data that initially cost $2 million to generate every hour, making it available to cancer researchers everywhere,” said Casey Greene, director of the CCDL.

The donation from the California-based foundation is in tune with ALSF’s mission: filling the gaps in funding towards pediatric cancer research, this time through a coalition of data scientists, researchers and computer engineers. Known for its grassroots approach to fundraising, the 13-year-old Bala Cynwyd-based nonprofit has funded some 800 pediatric cancer research projects. The organization was founded by Jay and Liz Scott, the parents of cancer patient Alexandra “Alex” Scott, who died in 2004.

The lab, a team of seven based in Center City, was first launched in 2017. Thus far, it has processed over 150,000+ childhood cancer data samples made available to researchers like Dr. Stephen Mack from Houston-based Baylor College of Medicine.

“Having more data in one place and being able to access it the same way as anyone else and being able to work with that data and our collaborators is an important aspect that will advance research,” the researcher said.

Over the summer, ALSF released a landmark data set that included the genomic sequencing of 25 unique pediatric cancer types, in partnership with the National Cancer Institute-backed Pediatric Preclinical Testing Consortium. Dr. John Maris, a CHOP pediatric oncologist who sits on ALSF’s Scientific Advisory Board, called the release “momentous,” and said the information would  “overcome some major problems we have when treating childhood cancer.”