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.

Kelly Barch headshot
December 1, 2025
The Lilabean F oundation (LBF) is thrilled to announce the appointment of Kelly Barch as our new Executive Director. Kelly will work closely with our Founder and President, Nicole Giroux , to advance the mission of the Lilabean Foundation and deepen our impact for children and families affected by pediatric brain cancer. Kelly is a mission-driven leader with more than 20 years of experience building programs, strengthening teams, and driving meaningful change across organizations. She spent 16 years at the National Cancer Institute, where she led enterprise-wide recognition programs, executive recruitment efforts, high-profile events, and cross-functional workforce initiatives. In addition to her public service, Kelly is the co-owner of Clotacin, a family-owned wellness company providing high-quality nutritional support to individuals affected by blood disorders. She oversaw operations, customer experience, and brand development, helping expand the company’s reach and impact. A lifelong Washingtonian, Kelly lives in Kensington with her husband, Justin, their children, Taylor and Beau, and their dog, Boudreaux. Outside of work, she loves staying active with her family and cheering on her alma mater, the LSU Tigers. When asked what excites her most about this new chapter, Kelly shared: “I am honored to step into the role of Executive Director and excited to bring my passion for service to the Lilabean Foundation. The opportunity to fund critical pediatric brain cancer research and help raise awareness means so much to me, and I am truly grateful to be part of this mission.” Please join us in warmly welcoming Kelly to the Lilabean Foundation. We look forward to the leadership, energy, and heart she will bring to this work!
November 12, 2025
On November 1, 2025, the Lilabean Foundation for Pediatric Brain Cancer Research (LBF) hosted its 14th Annual Fall Ball at The Schuyler at the Hamilton Hotel in Washington, D.C., raising over $1.1 million to support vital pediatric brain cancer research. This fundraising milestone reflects the unwavering commitment of the foundation’s community and partners to improve outcomes for children diagnosed with brain cancer. The evening was one of celebration and remembrance, as we honored three cherished LBF Heroes—Cameron, Kasey, and Reed—though their lives were far too short, their strength, joy, and bravery continue to guide our mission and fuel our determination. The evening’s program was filled with heartfelt speeches that reminded guests of the night’s true purpose. LBF Founder and President Nicole Giroux opened the program, sharing, “Studies say that we can go weeks without food, days without water, minutes without oxygen, but we can’t LIVE a MOMENT without hope. Your presence here tonight gives me and so many others immeasurable hope. Hope is what propels us forward. Hope gives us strength to endure hardship and believe in a better future.” The first award of the night was the LBF “Cam’s Crew” Volunteer of the Year Award , presented to the Behr Family . Evan and Caitlin Behr, along with their family, have been deeply involved with LBF since 2021, generously sharing their time, expertise, and resources. LBF is deeply grateful for their unwavering commitment and generosity, which embody the spirit of this award, created in honor of LBF Hero Cameron Corno and her family. One of the most moving moments of the night was the presentation of the Jack Purssord Courage Award to Ben Bellavia-Cortezi , age 18, honoring his extraordinary strength and resilience throughout his battle with medulloblastoma. Ben’s remarks captivated the audience with their wisdom and grace. He shared, “Every single pediatric brain cancer patient and survivor is so much more than their diagnosis… I believe strongly that with more funding, researchers can develop better treatments- ones that not only save lives but also preserve the quality of those lives.” Ben is applying to colleges for next fall and plans to study mechanical engineering. The funds raised at this year’s Fall Ball will go directly toward groundbreaking research initiatives to discover new treatments and scientific advances for children with pediatric brain cancer. The Lilabean Foundation extends heartfelt thanks to all the sponsors, attendees, volunteers, and donors who made this year’s event such a success. As Ben so wisely put it, “Together, we can give more kids the chance to grow up, chase their dreams, and tell their own story.” Learn More and Get Involved For those unable to attend the Fall Ball, there are still many ways to be part of the Lilabean Foundation’s mission. To learn more about upcoming events, volunteer opportunities, or how to make a donation, please visit www.lilabeanfoundation.com . Together, we can continue to bring hope and funding to pediatric brain cancer research.
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