Earlier in 2021, Alex’s Lemonade Stand Foundation committed $18.5 million to four game-changing, collaborative projects at 15 institutions in the United States and Europe. Funded through the Crazy 8 Initiative, these projects are taking on the most deadly childhood cancers with one singular focus: curing the incurable.
In September, the four project teams gathered at the Crazy 8 Summit, a two-day virtual event in which the scientists shared, collaborated and challenged each other. ALSF asked the researchers to be bold and dream big with game changing ideas. In just a few months of work, these four interdisciplinary teams have already made significant progress, setting the stage for discoveries that are already changing the way the research community understands pediatric cancer.
Two Alex’s Lemonade Stand Foundation (ALSF)-funded researchers, Michelle Monje, MD/PhD and Cigall Kadoch, PhD, have been named as Howard Hughes Medical Institute (HHMI) Investigators. The HHMI program supports more than 250 investigators, located at more than 60 research institutions across the United States. As HHMI investigators, Dr. Monje, who is based at Stanford University will study the interactions between aggressive brain cancers, like glioma, and the nervous system’s circuity; and Dr. Kadoch, who is based at Dana-Farber Cancer Institute, will study chromatin and gene regulation in childhood and adult cancers. Both will receive $9 million over a 7-year period.
It is particularly exciting for the ALSF community that HHMI has awarded two Investigator-ships to researchers who are intensely focused on the biology of childhood cancers.
Patti Gustafson became aware of childhood cancer when her son Michael was diagnosed with medulloblastoma, a type of brain tumor. Michael was nearing the end of his life when he developed his “Master Plan” to donate his tumor tissue to science so a cure might be found for other children. From his plan, the Swifty Foundation was born. Michael died at the age of 15. Today, his family caries on his foundation. “Before I was in this space, I always assumed 'somebody' was curing childhood cancer. I mean, everyone wants children to stop dying from cancer, so of course it’s being taken care of. Living in this space, I now know how underfunded childhood cancer research is compared to adult cancer," said Patti, who is the executive director of the Swifty Foundation. In addition to promoting tissue donation, the Swifty Foundation also funds research in partnership with Alex’s Lemonade Stand Foundation. ALSF has collaborated with 23 foundations, similar to the Swifty Foundation. This collaboration is a unique way for smaller foundations to make a huge impact in the search for cures for childhood cancer. Here’s how:
Dr. Janice Withycombe, an ALSF-funded research nurse at Clemson University and Prisma Health, believes that the long-term side effects of pediatric cancer treatment can best be understood not by talking to the parents of a child, but by talking to the child directly to hear their experience.
Chemotherapy has long been a part of the frontline treatment plan for kids battling high-risk neuroblastoma. But when neuroblastoma becomes chemotherapy resistant, doctors are left with a dwindling list of options for children, who are desperate for cures. For these children, it is critical that researchers work to understand what causes this chemotherapy resistance and then find a therapy that works. One Alex’s Lemonade Stand Foundation (ALSF) researcher, Dr. Patrick Reynolds, made a discovery that could be a game changer.
Fusion proteins have been identified as major drivers of many childhood cancers. Fusion proteins arise when a piece of chromosome breaks off and combines with another chromosome. Chromosomal rearrangements such as this can form new genes, fusion genes, that when expressed produce a fusion protein. Sometimes these fusion proteins lead to cancer by reprogramming activities in the cell that cause uncontrolled growth of cells.
At 3-and-a-half years old, Sam's parents found a large lump on Sam's abdomen. He underwent surgery to remove it and was cancer-free for a short time. When the cancer returned, it was treated like stage 4 neuroblastoma. Sam has been cancer-free since 2017!
