Following Her Lead: A Mother’s Journey through Pediatric Brain Cancer

Late on a Wednesday night, in the radiology suite of Children's Hospital, a kind and gentle radiologist told us that our daughter had a brain tumor. We didn't know yet what it would mean for her future but my husband and I are both doctors and we understood immediately the wide breadth of possibilities that our daughter's future could hold. As we went to the ER and then up to the Pediatric Intensive Care Unit for one of the longest and hardest nights of our lives, we worried about so many things. And yet, in that night and in the days and weeks that followed, we also were fortunate that there were things we didn't have to worry about -- realities that unfortunately impact so many other families walking this path alongside us. We didn't worry about whether we could take time off of work and still keep our jobs, or whether we could afford the medical care she would need (thanks to good health insurance). We didn't worry about how we would travel from a rural area to a major medical center to be able to access the specialty care she needs. We didn't worry about whether a medical language interpreter would be able to help us understand our daughter's treatment options and communicate our needs in a language different from that of our medical team. 


Our daughter, Maddie, is a person who cares deeply about injustice and unfairness in the world around her. She looks around and she notices things in the oncology clinic and the hospital that make the impossibly difficult experience of being a child with brain cancer (or caring for a child with brain cancer) even harder for some families. 


I have had the opportunity in my work on the Lilabean Foundation board to sit in on the Children's Brain Tumor Network (CBTN) committee focused on Diversity, Equity & Inclusion in the care of kids with pediatric brain cancer. One of their current projects is to increase access to translated clinical trial consent forms, information sheets, and instructions, so that more families will have access to the forms and instructions they need in the language they speak. This will allow more families to fully understand the options and care, and increase access to clinical trials that offer potentially lifesaving or life-changing treatment. 


To honor Maddie and her desire to make the world a little more just for other children, we are delighted that the Lilabean Foundation is partnering with us so that all donations from Maddie's hero page will support the work of the CBTN DEI team to increase access to language translated forms for more children and families. 


As with all things on this journey, we are following Maddie's lead. We are grateful to so many people who walk alongside us to support her vision for a different future for kids with pediatric brain cancer. Our hero is brave and bold and kind and cares deeply about the world around her, and we are honored to follow her lead.

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LBF's Transformative Partnership with CBTN Drives Groundbreaking Advances Brain Cancer Research

The Lilabean Foundation’s Transformative Partnership with CBTN Drives Groundbreaking Advances in Pediatric Brain Cancer Research

March 12, 2025
The Lilabean Foundation (LBF) has played a vital role in advancing pediatric brain cancer research, providing significant support to the Children’s Brain Tumor Network (CBTN) based at the Children’s Hospital of Philadelphia. From its origins as a small family foundation, LBF has grown into one of the most influential contributors to CBTN, driving innovative research and achieving new milestones in philanthropy. One of the most notable impacts of LBF’s support is its investment in Project Accelerate, an initiative designed to expedite research and enhance the Pediatric Brain Tumor Atlas. Through LBF’s backing, CBTN has been able to recruit essential data engineers and bioinformaticians, improving research methodologies and strengthening data models. This investment has helped break down silos and create more robust predictive models, optimizing diagnostic accuracy and advancing AI technology. This initiative is positioning CBTN to achieve transformative breakthroughs in precision care and treatment for pediatric brain tumors “The impact of The Lilabean Foundation's generosity cannot be overstated,” said Dr. Adam Resnick, Scientific Director of the Children’s Brain Tumor Network.” “With this partnership, we are paving the way for the next era of pediatric brain cancer treatment and care. Thanks to this continued support, we are one step closer to ensuring that children with brain tumors have the best possible outcomes.” Maximizing Research Potential and Driving AI Innovation: LBF’s contributions have also been instrumental in maximizing the impact of the National Institutes of Health’s (NIH) data generation initiative. With LBF’s support, CBTN was able to extract and ship over 7,000 specimens, enabling the standardization of critical molecular data. This data has formed the foundation for AI-driven technologies, putting CBTN at the forefront of AI research and allowing for discoveries that were once unimaginable. By integrating clinical, molecular, and imaging data into a single multimodal dataset, this collaboration is enhancing the ability to create more individualized and effective treatment plans for children with brain tumors. “The integration of this multimodal data is a game-changer,” said Nicole Giroux, Executive Director of The Lilabean Foundation. “It has the potential to dramatically improve how we understand and treat pediatric brain tumors.” Preparing for Future Breakthroughs: With LBF's continued support, CBTN is now poised for its next big leap in research. The foundation’s investment in Project Accelerate has led to the creation of an extensive multimodal dataset, which was instrumental in securing a first-of-its-kind award from the Advanced Research Projects Agency for Health (ARPA-H). This prestigious award, focused on pediatrics, combined with a new partnership with Amazon Web Services, positions CBTN for major advancements in AI capabilities and further opportunities for breakthrough research. A Legacy of Impact: LBF’s sustained commitment to CBTN is a testament to the power of philanthropy and the profound impact that a dedicated donor community can have on children’s healthcare. Their investments have not only laid the groundwork for groundbreaking research but are also shaping the future of pediatric brain tumor treatment and care, from bench to bedside. “We are incredibly grateful for the support of The Lilabean Foundation,” said Jena Lilly, executive director of CBTN. “Their partnership has been invaluable in driving forward our shared mission to improve the lives of children battling brain tumors. Together, we are creating a future where cures and better treatments are within reach.”
Bethesda magazine features The Lilabean Foundation hero in January/February issue

Bethesda Magazine Features LBF in January/February Issue

February 11, 2025
We are thrilled to be featured in the Bethesda Magazine January/February 2025 edition! It’s a privilege to share the work we’re doing at the Lilabean Foundation to support families and children and the heartfelt origin story of why the foundation exists. Grateful for the opportunity to amplify our mission and continue making a meaningful impact in the community. Thank you Amy Halpern and Bethesda Magazine for capturing and creating such a heartfelt feature. Click here to read the article and the January/February edition of Bethesda Magazine.
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